research australia grassroots winter 2014

WINTER 2014

RESEARCHAUSTRALIAAN ALLIANCE FOR DISCOVERIES IN HEALTH

ISSUE SEVEN02 A Message From The CEO

03 Cancer Research UK’s #nomakeupselfie campaign raises $14.5m in a week

04 Neurobionics Devices Provide The Answer To Parkinson’s Disease, Epilepsy, OCD & Depression

07 Help Our Girls Reduce Body Dissatisfaction And Depression

08 $1 Million To Tackle Nation’s Biggest Healthcare Challenges

09 Vital Eye Care For Older Australians

10 New Infection Control Body For Antimicrobial Resistance

11 Change In The Air At The Lung Institute Of WA

12 Inaugural Hope Luncheon At The Ingham Institute A Resounding Success

15 We Can All Help Find The Answers To Cancer

16 The Perfect Poison

17 Molecular Medicine Provides Personalised Migraine Treatment

18 Health System Research The Right Tonic For Patient Care

19 Search for Research

20 Research Australia Awards Nominations Now Open

22 At Last A Voice For The Australian Rare Disease Community!

23 Leading Australia In Priority Research For Mental Disorder Prevention

24 Australian First Gestational Diabetes Study

26 New Mental Health Building Will Deliver Unique Model Of Care

27 Personalised Medicine: The Future Of Health Care In Australia

28 Could Pain Cause Behavioural Problems In Older People With Dementia?

30 Building Better Lives For People With Dementia

31 Stopping Cancer Recurrence In Its Tracks

32 Enhancing Healthcare Access for Rural Communities in Australia: Time for local and sustained solutions

33 Hazel Hawke’s Dementia Care Legacy

Always expect the unexpected!

After ten years of lobbying Research Australia warmly welcomes the Government’s far-sighted proposal of a Medical Research Future Fund (MRFF) in the Federal Budget.

The initial investment in the fund of $1.1 billion will provide positive support to the sector. While we recognise that if implemented as proposed, the funding will take time to build up, longer term it will be an iconic fund providing a significant boost to the health and medical research sector, delivering much more certainty around future funding. It will effectively double the amount of funding the NHMRC currently provides each year, echoing the doubling of funding that occurred in the first decade of this century following the Wills Review.

The MRFF is dependent on passage of legislation to create it and more controversially it also depends on legislation to introduce the co-payments on prescriptions and doctor visits. The ALP has already indicated it is opposed to the co-payments, leaving the Government to deal with the minor parties in the Senate to pass the legislation.

There are also calls from across our sector for better definition of the structure and focus of the proposed fund. Will it invest in health as well as medical research?

Will funds be allocated to reflect the burden of disease in Australia? Will research with non-commercial as well as commercial prospects be funded? Will fundamental research also be considered, and will there be a strategic overlay to meet national objectives or will it just be based on individual project excellence? So there is still much work for Research Australia.

Looking more broadly at the budget, we do not know the impact of the Government’s message around belt tightening on the propensity to donate generally. Will people respond by being more generous, as they consider those who may be struggling with reduced benefits and more expenses, or will they be responding to the ‘hip-pocket nerve’ and feel they can no longer afford to give? And will they think health and medical research gets enough funding, and support other causes instead? Things are never quite as obvious as they seem at first glance, so we will be seeking to measure these attitudes in our annual polling in June.

Finally, I would like to remind you all that we have begun our search for the sector’s heroes in advocacy, leadership, philanthropy and research. And for the first time we will have an award to showcase high achievers in Health Services Research. This area of research was singled out by the McKeon review as key to having a more efficient health care system. Please take time to nominate someone you admire for any one of our seven awards.

This edition of grassRoots covers such a broad variety of themes; I continue to be amazed by the depth and breath of Australia’s research capability and I am pleased to highlight some of our country’s many achievements in this forum. Enjoy the read.

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2 Research Australia grassROOTS WINTER 2014

Winter 2014

A Message From The CEO

SAVE THE DATESResearch Australia Events for 2014

• Simon McKeon AO – Press Club Address 11 Jun 2014Time: 11:30am – 1:30pmVenue: National Press Club 16 National Circuit Barton ACT 2600

• 4th Annual Philanthropy for Health and Medical Research Conference 19 Aug 2014Time: 9:00am – 5:00pmVenue: Intercontinental The Rialto

• Nominations close for Research Australia Awards Dinner1 July 2014

• Research Australia Awards Dinner 5 Nov 2014Time: 7:00pm – 11:00pmVenue: Pier One Sydney Harbour HotelRegistrations Close: 31 Oct 2014see our website for more details

http://www.researchaustralia.org

https://www.facebook.com/pages/Research-Australia/123042877776968

https://twitter.com/ResAustralia

3Research Australia grassROOTS WINTER 2014

Winter 2014

During the past year in the UK a number of charities attempted to run fundraising campaigns based on social media “selfies”, where individuals are encouraged to take photographs of themselves and post them on various social media streams to promote a particular cause.

According to Nick Grant, Director of Strategy at Cancer Research UK (CRUK), none of these disparate campaigns had any significant success. However in March 2014 the concept was gaining in popularity and CRUK saw an opportunity. Says Nick, “on Tuesday 18th March our social media team noticed a trend that had started on social media whereby women were forwarding ‘no makeup selfies’ to ‘raise cancer awareness’ – it’s not clear where this initiated from.”

“On Wednesday 19th March, the CRUK social media team placed a single post on facebook and twitter with a ‘text to donate’ number and a suggested £3 donation. This quickly went viral. As well as text donations, we received many donations from visitors to our websites, and also saw an uplift in other areas, including increased visitors to our shops, increased sign-ups to our running events and increased visits to our cancer information services.”

From that single well-timed post, CRUK achieved an unprecedented and truly staggering response. Nick continues, “on the Wednesday we received more one-off donations through our website than we received in the whole of 2013. We also received the highest ever traffic to our website … in total we raised over AUD$14.5 million within a week. This included a number of donors signing up to monthly donations so the long term impact will be even higher.”

The #nomakeupselfie campaign is the latest marketing success from Cancer Research UK, which in recent years has developed a number of highly successful initiatives to consolidate its position as the world’s largest independent cancer research charity.

Cancer Research UK’s #nomakeupselfie campaign makes $14.5m in a week

Hear more from Nick Grant at this year’s Philanthropy

Conference – Melbourne, Tuesday 19th August!

Nick Grant, Director of Strategy for Cancer Research UK, will

be the keynote speaker at Research Australia’s 4th annual

Philanthropy for Health and Medical Research Conference that will be

held in Melbourne on Tuesday 19th August 2014. Save the date

today to register and hear more about recent innovative and

groundbreaking campaigns for the world’s largest independent

cancer charity.


Winter 2014

What is the problem?One in 20 Australians have a neurological or psychiatric condition that is resistant to drug or other treatments. Their conditions are largely intractable, or for a limited few, can only be tackled with expensive, highly invasive, and risky surgery.

In 30 per cent of epilepsy cases drug interventions have little effect. The result is a life where the sufferer has multiple seizures a day and frequently feels isolated from the community, often leading to depression. Almost half (49%) of those with epilepsy live below the poverty line and 83% are unable to maintain a full-time job.

In almost all cases of Parkinson’s disease the drugs that provide relief from uncontrolled movement begin to lose their effectiveness in less than a decade and can carry intolerable side-effects. Currently 10 million people worldwide have Parkinson’s disease and in 80% of cases the condition affects people over the age of 50. With a rapidly aging population Parkinson’s disease will become an increasingly significant burden on our health system.

Obsessive compulsive disorder (OCD) and clinical depression represent highly debilitating psychiatric conditions. The immediate health of the patient is sometimes at great risk; but we believe that a possible solution exists.

What is the solution?Neurobionic devices provide the answer. These devices stimulate, through electrodes, specific targets within the brain. This technique is known as deep brain stimulation (DBS). Much like how the bionic ear works, which stimulates the cells in the ear that send signals to the hearing parts of the brain, direct electrical stimulation of the region of the brain that controls movement is known to halt tremor in those with Parkinson’s disease.

DBS devices are already in use to treat the symptoms of Parkinson’s disease in thousands of people worldwide, however the current technologies are based on pacemakers, with significant lead wires, a large battery pack inserted into the chest, and the devices suffer failure rates of 20% to 30%.

The Bionics Institute is bringing together its 30 years of technical knowledge in the development of the bionic ear and combining that with DBS technologies to produce devices that are smaller, easier to insert and more intelligent.

We are developing technologies that are similar to those used in the bionic ear, with short lead wires and the external hardware and battery sitting compactly behind the ear, much like a hearing-aid.

In epilepsy, where abnormal brain activity causes seizures, we hope to develop an implanted device that detects and counteracts this activity with an opposing electrical stimulus. The device will be programmed to give exactly the right stimulus depending on the brain activity at the time. This operation will be seamless without the user even knowing it has happened.

The advantage of our approach is that the base technology is already safely used in 300,000 people world-wide. It is small, comparatively inexpensive, easy to implant, and it places the electrodes closer to where they need to be.

Above all it will give people their lives back.

How long will it take?Work has already begun. Between 2014 and 2019 we hope the devices will be brought to small scale clinical trial.

Where are we up to?With surgical and psychiatric colleagues from St Vincent’s Hospital in Melbourne we have implanted an OCD patient with an existing DBS device. The patient has shown a remarkable change in behaviour,

Neurobionics Devices Provide The Answer To Parkinson’s Disease, Epilepsy, OCD & Depression


from being essentially housebound and suffering from an all-consuming cleaning ritual to now being free enough to find and obtain a job.

The patient is only one of a handful of people worldwide to have this surgery and he is assisting us with our research on advancing DBS technology.

We have also established an objective measure for tremor in people with Parkinson’s disease. Current measures are subjective and often drug treatments are applied in a trial and error, fashion leading to delays in accurate drug treatment levels. This new measure will also provide us with the baseline information to program Parkinson’s disease devices that can adapt to the users’ needs.

In epilepsy we are working on a simple and easily applied technology to measure brain activity, particularly to aid the diagnosis of blackouts and ongoing management

of drug treatments. Rather than hospitalisations that cost tens of thousands of dollars per week, our researchers are working on a device to measure electrical activity, record it, and also send a ‘warning’ signal to a patient’s carer. No accurate measure of epileptic blackouts currently exists and clinicians are reliant on patients’ reports of their experiences, which can be sketchy at best. Using a recording device that slips easily under the scalp and can record abnormal brain activity will help clinicians with diagnosis and drug treatment management, and will provide the necessary data for future epilepsy devices.

How much will it cost?The Institute has undertaken significant forecasting to determine the cost of the project and $25 million is required to fulfil the Neurobionics program.

While we will be seeking support from the state and federal governments, we will also be looking to the philanthropic and corporate sectors to provide much of the enabling funding for this critical program.

What is the Bionics Institute and why us?The Bionics Institute (originally called the Bionic Ear Institute) was established by Professor Graeme Clark in 1984 as a not-for-profit medical research institute to perform innovative research associated with bionic ears (cochlear implants).

The Institute’s international reputation has been created by successfully applying multidisciplinary research to achieve significant clinical outcomes in three key areas: bionic hearing, bionic vision and, most recently, neurobionics. Current staff members played key roles in the initial invention and successful development of the cochlear implant that is now providing 300,000 people worldwide with the gift of hearing. These same people led the teams that recently designed, manufactured and switched-on Australia’s first bionic eye device. Collectively, our scientific leadership team have over 200 years of experience working on the research and development of bionic technologies. www.bionicsinstitute.org

Experimental electrode manufacturing at the Bionics Institute

.

The advantage of our approach is that the base

technology is already safely used in 300,000 people world-wide. It is small,

comparatively inexpensive, easy to implant, and it

places the electrodes closer to where they need to be.

http://www.bionicsinstitute.org


Winter 2014


Winter 2014

For many parents and teachers of adolescent girls, there comes a time when their daughter or student is unhappy with their appearance.

It can be frustrating to tell a teenager that they should not be dissatisfied with their bodies and feel like the message is not getting through.

The topic has long been debated in the mainstream media and many researchers have developed intervention programs to try and prevent body dissatisfaction.

Many see immediate improvements but unfortunately fail to enact long-term changes in girls’ beliefs and body dissatisfaction.

Last year, beyondblue funded research project Happy Being Me by Professor Susan Paxton from La Trobe University to implement a prevention program in the hope it would reduce body dissatisfaction and also have a positive impact on depressive symptoms.

Nearly 500 year 7 school girls in Victoria were split into two groups; an intervention group who underwent weekly sessions in the program and a control group who did not.

beyondblue knows there is a close association between eating, body image disorders and depressive symptoms. With this in mind, the research aimed to reduce body dissatisfaction and its risk factors while also having a positive impact on depressive symptoms.

Over six weeks, the intervention group took part in a weekly program that included sessions discussing topics such as appearance, body image, eating disorders, media and advertising, and strategies for mindfulness.

Role play, discussions and activities were used to engage the girls, with structured sessions on different themes. The researchers deliberately targeted risk factors of internalizing the ‘thin ideal’ by adopting different approaches across sessions. An example of this was the topic of ‘valuing qualities other than appearance’ being discussed in session one, which then was revisited in ‘media literacy’ in session three, and in ‘dissonance’ in session six.

The girls who took part showed significant improvements in body dissatisfaction, weight and shape concerns, depressive symptoms, dietary restraint and disordered

eating, internalisation of the thin ideal, media literacy and expectancies of thinness relative to the participants in the control group.

It is difficult to create an educational program that achieves its purpose and is also popular with the adolescent girls taking part. However, Happy Being Me was very well-received and appears to have been successful on both of these fronts.

In 2011, Dove produced a video of how a cover model is made to look flawless using make up, photoshop and editing techniques. The video, which went viral on the internet, was used in the Happy Being Me sessions as an educational tool and discussion point about images of women in the media.

Many girls said in their assessment of the program that this discussion continued to resonate with them long after the program had finished, illustrating the strong

influence the media has on body image and cementing attitudes in young women.

Professor Paxton says that because the program is brief and easy to deliver, it has potential to be widely disseminated in secondary schools.

For any adolescents or their parents looking for advice about how to deal with depressive symptoms or risk factors, beyondblue has a number of resources.

beyondblue has recently developed a new youth website for young people who may be experiencing symptoms of depression and anxiety. The youthbeyondblue website includes factsheets for both

parents and teenagers on behaviour to look for in people experiencing eating disorders or low self esteem.

beyondblue experts advise to look out for someone who is irritable, anxious or depressed, having suicidal thoughts or feeling guilty. They may be sensitive to criticism or comments about food, exercise weight or body shape, and talk a lot about this topic.

If someone diets or overeats excessively, eat very quickly or slowly, withdraw from their friends and family, avoid social situations involving food, wearing loose fitting clothes to hide weight loss. Help is available, and beyondblue urges people to get help from family members, your GP or a counsellor.

Trained mental health counsellors are also available at the beyondblue Support Service via phone on 1300 22 4636 or via www.beyondblue.org.au/get-support for online chat of email responses.

The Support Service is supported by The Movember Foundation.

Help Our Girls Reduce Body Dissatisfaction And Depression

It can be frustrating to tell a teenager that they

should not be dissatisfied with their bodies and feel

like the message is not getting through.

http://www.youthbeyondblue.com/

http://www.youthbeyondblue.com/

http://www.beyondblue.org.au/get-support

L–R: Prof Christine Bennett AO, Chair Bupa Health Foundation Steering Committee; Adjunct Assoc. Prof Anne Abbott, Monash University; Dr Paul Bates, Bupa Health Foundation Steering Committee; Prof Sally Lord, University of Notre Dame Australia (accepting on behalf of Dr Charlotte Hespe); Dr Kylie Mansfield, St George Hospital and UNSW (accepting on behalf of Prof Kate Moore); Mr John Conde AO, Chairman Bupa Health Foundation; Dr Priya Sumithran, University of Melbourne; Prof Michael Friedlander, Australia New Zealand Gynaecological Oncology Group.


Winter 2014

Important research projects tackling some of Australia’s toughest health challenges, including vascular disease and cancer, have received funding with the announcement of the Bupa Health Foundation 2014 Health Awards.

The Foundation, one of the country’s leading charitable organisations dedicated to health, honoured the pioneering clinician researchers who will spearhead five projects with combined funding of more than $1 million.

Focused on delivering positive change in the health system, the projects will focus on:

• Investigating whether it is possible to predict the likelihood of success of a weight loss program;

• Shifting health practice to prioritise non-invasive strategies over carotid artery surgery in stroke prevention;

• An innovative approach to improve clinical follow-up for women with advanced ovarian cancer;

• Implementation of a point of care electronic decision-support tool for cardiovascular disease management across 100 inner city primary care practices;

• A clinical trial evaluating the effectiveness of antibiotic treatment to treat patients with urge incontinence, a common problem in women that can severely inhibit quality of life.

Bupa Health Foundation Steering Committee member Dr Paul Bates said

that Australia is at the forefront of health research and innovation.

“Like the Foundation, Australia’s clinician researchers are committed to driving positive change to combat our toughest healthcare challenges.

“Acting as a catalyst for health and medical research, Bupa Health Foundation is proud to partner with some of Australia’s best and brightest in translating knowledge into action,” said Dr Bates.

Although these projects have a relatively short timeframe, all are expected to translate to real benefits in the years to come.

“This year’s entries were of an incredibly high calibre, and we are very proud to support the future work of these worthy award recipients,” Dr Bates added.

Since its inception in 2005, the Foundation has contributed more than $23 million to health research and health programs across its key focus areas: wellbeing, managing chronic disease, healthy ageing, empowering people about their health, and promoting affordable healthcare.

The grant recipients were recognised at the annual Bupa Health Foundation Health Awards dinner held in Melbourne on Thursday 3 April 2014.

$1 Million To Tackle Nation’s Biggest Healthcare Challenges

2014 Health Award recipientsWinner: Dr Priya SumithranTitle: Investigating a novel

method to predicting weight loss outcomes

Location: University of Melbourne, Austin Health

Winner: Professor Kate Moore Title: Can antibiotics

cure refractory urge incontinence? A randomised clinical trial

Location: St George Hospital, University of New South Wales

Winner: Adjunct Associate Professor Anne Abbott

Title: Optimising outcomes in patients with carotid arterial disease

Location: Monash University, School of Public Health and Preventative Medicine

Winner: Professor Michael Friedlander

Title: Measure of Ovarian cancer Symptoms and Treatment (MOST) concerns following treatment

Location: Australia New Zealand Gynaecological Oncology Group (ANZGOG)

Winner: Dr Charlotte HespeTitle: Evaluating the

implementation of a point of care electronic decision-support tool in a quality improvement program for heart health risk management across 100 inner city general practices

Location: University of Notre Dame Australia

Australia is said to be a lucky country. But does your luck run out when you reach old age? Research shows that Australians have a 36 per cent chance of requiring residential aged care during their life. It is a sad, but true reality that up to two thirds of older people in residential care may be visually impaired and there is currently no comprehensive eye care service model available.

The Centre for Eye Research Australia (CERA) thanks to support from the Equity Trustees Foundation and the Australian Government’s National Health and Medical Research Council (NHMRC) is filling this significant void. A new model of eye care for people in residential care facilities has been created: the Residential Ocular Care model. This comprehensive model was developed by a multidisciplinary team, including behavioural researcher Dr Gwyn Rees. The model provides:

• a thorough on-site eye examination

• refraction and spectacle provision

• cataract surgery

• referral to an ophthalmologist for medical or surgical treatment

• low vision aids and low vision rehabilitation

The grant from the Equity Trustees Foundation is important in providing funding support to determine the effectiveness of the model not just on visual acuity, but also quality of life, residential care daily functioning, depression, rates of falls and eye care utilisation.

The project is a true partnership across the vision sector, with low vision aids being prescribed by the Australian College of Optometry and Vision Australia providing professional development training in low vision rehabilitation techniques to staff members of each aged care facility.

Dr Rees said funding from Equity Trustees and the NHMRC is critical in enabling projects, such as the Residential Ocular Care model, that make a real difference to the quality of life for older Australians in residential care.

“At a time in people’s lives, when they rely on others to provide support, this project will ultimately provide the care they need to look after their vision and independence,” she said.

Behavioural Researcher Dr Gwyn Rees, CERA

..


Winter 2014

Vital Eye Care For Older Australians

It is the health system’s nightmare, bubbling just below the surface of our hospitals. Infections are becoming more and more resistant to antibiotics, while secondary infection rates during hospital stays continue to rise.

However, with antibiotics long off-patent, there is little reason for pharmaceutical companies to do anything about it.

In 2013 researchers lead by Professor Ramon Shaban from the Griffith Health Institute (GHI) were commissioned to create a detailed framework for Australia’s future national system for the surveillance and reporting of antimicrobial resistance (AMR) and antibiotic usage.

“The main concern is that we are rapidly running out of antibiotics to use to treat infections individuals acquire following increasingly routine surgical procedures, such as hip/joint replacements,” he said.

$11.9M has been allocated over 3 years to establish the national system. It is believed antibiotic resistance and hospital-acquired infections cost the health system tens of millions a year.

“The problem has two main facets, the growth and adaptation of microbes becoming resistant to antibiotics and the lack of new or pipeline antibiotics. Resistance to many last-line antibiotics is now common in Australian hospitals,” said Professor Shaban.

“Modern medicine and healthcare has mastered techniques to treat complex conditions to now only be thwarted by infections that we are unable to treat. Individuals who acquire a multi-drug resistant, healthcare-associated infection face a bleak future; we no longer have antibiotics to treat them.

“The first step, which we have begun, is to establish systems of data gathering and reporting on patterns of AMR and antibiotic use, coordinated through a single national coordinating centre. Make no mistake, this is the front line in health care,” he said.

In fact antibiotic resistance has been highlighted as an important problem in Australia since 1997. Since then governments have struggled to come up with an appropriate structure and model to combat it, largely owing to our federated system.

Meanwhile Griffith University has already begun incorporating AMR research into its postgraduate course for health professionals in the Master of Health Practice (Infection Prevention and Control).

Professor Shaban believes nothing less than a shake-up of the relationship between clinical practice and research needs to occur in order to break even with the problem. For many such a reform has been advocated for a long time.

“It’s probably the speed of evolution which is most worrying in this case. A globalised world brings all sorts issues to our door in double quick time and when biological evolution is pushing in the opposite direction we need a health system in which efficiency is of the essence, he said.

“The system we’ve developed brings research back to clinical practice. Contemporary physicians, nurses and scientists cannot just be rigorous in their own systems, they need to be part of researching, recording, coordinating and even analysing information.”

“Whether in a clinical or community context, infection prevention and control is an issue which will get bigger as our organisms and infections evolve and climate changes. Antibiotic resistance is something everyone will have to contend with right around the world.”

The research was commissioned by the Australian Commission on Safety and Quality in Health Care (ACSQHC) and the Antimicrobial Resistance Standing Committee (AMRSC), and a copy of the report is available at www.safetyandquality.gov.au

Professor Ramon Shaban (left) from Griffith University is leading research into antibiotic resistance and clinical training in infection control.


Winter 2014

New Infection Control Body For Antimicrobial Resistance

“The main concern is that we are rapidly running

out of antibiotics to use to treat infections

individuals acquire following increasingly routine

surgical procedures, such as hip/joint replacements,”

http://www.safetyandquality.gov.au

The founder and inaugural Director of the Lung Institute of Western Australia, Professor Philip Thompson has stepped down from the position he has held for the last 15 years, working with passion and dedication as Director to improve the lives of people living with chronic lung disease.

The Lung Institute of Western Australia has been extremely fortunate to have the vision, commitment and drive of Professor Thompson to create the Institute that exists today. Professor Thompson’s expertise and experience enabled the Institute to embrace a number of research disciplines with a broad approach to understanding lung disease. From its inception as the Asthma and Allergy Research Institute in 1999, to the change to the Lung Institute of Western Australia in 2006 it was different from most research institutes in that it was disease based, open to the public to participate, mixing clinic and laboratory research, and it was driven by both social and research purposes.

The diversity of Professor Thompson’s skills have greatly benefited the Lung Institute of Western Australia, and have led him to Curtin University as Clinical Professor; a lead partner in the Australian Asthma Genetics Consortium; Head Department of General Medicine (SCGH); President of the Thoracic Society of Australia and New Zealand; Editor-in-Chief of Respirology, Consultant Respiratory Physician (SCGH); and Director of the WA Node of the CRC for Asthma and Airways.

While at the Lung Institute of Western Australia, Professor Thompson has also achieved success and recognition on many fronts both nationally and internationally. This is reflected in him winning the Asia Pacific Society of Respirology Medal and TSANZ’s most prestigious award the Society Medal. This is in addition to the 250+ published manuscripts and book chapters and more than 17 higher degree awards, many being research fellowships.

With such big shoes to fill, the Board of Directors alongside Professor Thompson took 18 months to develop a succession plan, and in April appointed Winthrop Professor Geoff Laurent as the new Director. W/Professor Laurent comes with a wealth of experience and high international standing, as well as being the Director of the Centre of Cell Therapy and Regenerative Medicine (CCTRM) at the University of Western Australia and an Honorary Fellow at University College London. Prior to his appointment at the University of Western Australia in June 2012 he was the Director for the Centre of Respiratory Research, Head of the Department of Internal Medine and Vice-Dean of Enterprise at University College London.

W/Professor Laurent has published over 300 peer reviewed articles in international journals of biomedical research and was awarded the European Respiratory Society’s Presidential Award for his contribution to lung science. He is the Editor-in-Chief of the International Journal of Biochemistry and Cell Biology and has edited several books including a four volume Encyclopedia of Respiratory Medicine. He is a Fellow of the Academy of Medical Sciences and Past President of the British Association for Lung Research.

W/Professor Laurent said, “We are lucky in Western Australia to have leaders in lung research and a great depth of talent across paediatric and adult lung disease. Bringing the team together and working with other experts worldwide will allow us to be preeminent in improving the lives of people living with chronic lung disease.

“My vision is to build on the platform of the Lung Institute of Western Australia to create a global hub for respiratory research, based here in Perth. We have an opportunity to represent respiratory research across Western Australia and form key national and international partnerships.”

University of Western Australia Vice Chancellor Paul Johnson says: “I’m very pleased that Winthrop Professor Geoff Laurent has accepted the position of Director of the Lung Institute of WA. Geoff’s

pioneering studies have changed the way respiratory disorders are treated.

“Geoff will hold his new position concurrently with the Directorship of the Centre for Cell Therapy and Regenerative Medicine. In this dual role he will be able to promote stronger collaborative research, and enhance the University’s success in winning competitive research funding.”

Please join the Institute in recognizing and honouring Professor Thompson and welcoming W/Professor Geoff Laurent.

Winthrop Professor Geoff Laurent with Professor Philip Thompson.

“My vision is to build on the platform of the Lung

Institute of Western Australia to create a global hub for

respiratory research, based here in Perth.


Winter 2014

Change In The Air At The Lung Institute Of WA


Winter 2014Inaugural Hope Luncheon At The Ingham Institute A Resounding SuccessHailed as a fundraising success story, the Ingham Institute at Sydney’s Liverpool Hospital raised a total $44,500 from its inaugural Ingham Institute Hope Luncheon event on Friday 7 March. The event was held to celebrate International Women’s Day and to applaud the extraordinary talents of women in science at the Ingham Institute.

More than 200 female Ingham Institute supporters and scientists attended the inaugural event which headlined with Channel 9 Today Show Co-Host and Ingham Institute Ambassador Lisa Wilkinson as Master of Ceremonies.

Ingham Institute Chairman Terry Goldacre praised the success of the first-ever event and the robust community support driving it. “This stellar result has far exceeded our expectations and is a result of the tireless work of sponsors, supporters and the 2014 Ingham Institute Hope Luncheon Committee members”.

“It also exemplifies the overwhelming support of the South West and wider Sydney region to help our 200 strong team of researchers deliver new medical breakthroughs and treatments across a range of critical disease areas affecting Sydney’s South West and wider Australia.”

A key highlight of the Ingham Institute Hope Luncheon was the premiere of the Institute’s latest movie ‘Research Is Hope’. The six minute movie, which can be viewed from the Institute’s website, told the incredibly moving and inspiring stories of cancer survivors Sandra Page and Hanna Kmita and how medical research has given them greater hope and brighter futures.

Acclaimed Ingham Institute psycho oncology researcher Professor Afaf Girgis also presented important findings from her group’s research programs ‘Coping-Together’ and ‘PROMPT-Care’ which are making a significant difference to the wellbeing of Australian women suffering from cancer.

Funded by the National Health and Medical Research Council (NHMRC) and the Clinical Oncological Society of Australia (COSA), Coping-Together is a national self-directed, multimedia coping skills intervention program that aims to provide patients with cancer and their partners with a complete suite of practical resources to support them in managing the significant physical and psychosocial effects of the disease.

The first round of resources was completed in 2013 and includes a series of six booklets, a DVD, ‘Learning to Relax’ CD

and a log-in to a Coping-Together website. A critical phase of the study will involve the research team evaluating the impact of the final version of the Coping-Together resources by a broad spectrum of cancer patients and their partners across Australia, with a focus on cancers prevalent with women including breast, colorectal and melanoma.

“So far we have recruited 11 couples and our goal is to recruit a total of 600, so we are currently calling out for Australian cancer patients who were recently diagnosed with breast, colorectal or prostate cancer or melanoma and their partners to get involved. The sooner we reach our target, the sooner we can launch the resources and help to improve both the physical and mental wellbeing of cancer

patients and their partners,” Professor Girgis continued.

A further component of the group’s portfolio is the PROMPT-Care project, funded by the Cancer Institute NSW which aims to give patients prompt care by asking them to report on their physical and psychological wellbeing in the waiting room using iPads or tablets. Work on the PROMPT-Care project commenced in 2013 and is expected to be completed by mid-2015, with the ultimate goal for it to be rolled out in cancer therapy centres throughout NSW.

Ingham Institute Hope Luncheon Committee member Lyn Ingham, daughter of the Ingham Institute’s Founding Benefactor Bob Ingham AO, applauded the efforts of all event sponsors and

Ambassador Lisa Wilkinson, MC at the Ingham Institute’s Inaugural Hope Luncheon

.


supporters, with special note given to major ‘Hope’ sponsor Narellan Pools.

“On behalf of the Ingham Institute, we are absolutely elated with the success of our first-ever Ingham Institute Hope Luncheon,” said Ms Ingham.

“Central to the event’s success was the generous support of our Hope partner Narellan Pools. Narellan Pools demonstrates true corporate citizenship and it’s fantastic to see an iconic business born out of the Macarthur region come onboard to support such an iconic event.”

“The funds raised from the event will go a long way to helping Dad’s vision of creating a healthier Australia come to life and assist the Ingham Institute’s research team in their mission to deliver new treatments across a range of critical disease areas including cancer, early childhood disease, injury and rehabilitation and mental health,” she continued.

Narellan Pools Owner and Strategic Advisor, Debb Meyer said that they were delighted with the success of the event and were committed to improving the health and wellbeing of Australians as part of their

corporate social responsibility (CSR) values.

“Community is one of the five Narellan Pools values and our vision is to bring dreams to life. This is not only true of the core of what we do as builders, but extends to how we operate in the community,” she said.

Other major sponsors of the Ingham Institute Hope Luncheon included Dove partners Harrington Grove Country Club, Coutts Solicitors & Conveyancers, Absolutely Fabulous Event Decorations and Marsdens Law Group. Butterfly partners included In Fine Print, Cameron Brae, Karen Hexton, Grace Records

Management, Sarita’s Fashion, McGrath Real Estate, Kelly Partners Chartered Accountants and Fitzpatrick Group.

“Our event and prize supporters were also instrumental to the success of our raffle and lucky draw prizes; we had a fantastic array of prizes on the day and were blown away by the tremendous support from businesses from the local Macarthur region and the greater metropolitan region. Special thanks also go out to Diamond World Jewellers at Narellan for their generous donation of our major prize,” added Ms Ingham.

Due to the overwhelming success of the inaugural Ingham Institute Hope Luncheon, the event is now set as a permanent fixture on the Ingham Institute’s annual calendar of events. Details for the 2015 Ingham Institute Hope Luncheon will be released soon. For further information see www.inghaminstitute.org.au.

“On behalf of the Ingham Institute, we are absolutely

elated with the success of our first-ever Ingham

Institute Hope Luncheon,”

http://www.inghaminstitute.org.au


Winter 2014

Tens of thousands of Australians have volunteered

to participate in cancer research via Register4.

Fast-track your cancer research

recruitment needs with Register4

RESEARCH FOR CANCERREGISTER

register4.org.auLEARN MORE

Register4 was established with seed funding from the National Breast Cancer Foundation.

Register4 is an online resource for Australian men and women over the age of 18, with or without a diagnosis of cancer, who wish to participate in cancer research studies. It aims to reduce the costs and time involved in recruitment for cancer research studies by matching researchers with willing participants, harnessing the speed and reach of the internet.

An initiative of the National Breast Cancer Foundation (NBCF), Register4 was launched in 2010 to help accelerate understanding towards the prevention and cure of breast cancer and, more specifically, to address the substantial obstacles faced by researchers in recruiting participants for breast cancer research studies. Register4 asks people to register their interest in considering participation in scientifically appropriate and ethically approved research studies. In doing so, it utilises the power and reach of the internet, and the desire by many in the community to contribute to research in ways that are complementary to donating money. Register4 was inspired by the Army of Women in the United States, and the Australian Twin Registry; community resources of people willing to consider participation in research.

To date, Register4 has over 40,000 members (> 96% female) with a broad demographic representation: aged from 18 to over 70 years (majority 30-59 years); residing in all states and territories with the majority in NSW, Victoria and Queensland; 80% were born in Australia. The membership is generally highly educated (over 45% reporting they hold a university degree or higher), and motivated to participate in research (over 20% are willing to provide DNA samples or participate in a clinical trial and nearly 15% to provide a sample of breast tissue).

Lifestyle and family health history (including reproductive history, history of breast or other cancers, and chronic illness) has been collected for more than 20% of members through an online ‘Epi-Q’ questionnaire. Of the > 7,300 members who completed the Epi-Q, 20% have a prior history of breast cancer, and 75% have no history of any cancer. Other chronic health conditions recorded in the questionnaire include asthma (20%), high blood pressure (16%) and osteoarthritis/ osteoporosis (12%). Over 60% of participants have never smoked.

Register4 has already demonstrated significant utility, being used to successfully

recruit for 20 cancer research projects to date (involving over 13,000 members). The types of projects for participants can vary from filling out a questionnaire to something more involved such as providing a DNA sample. Recruitment times were dramatically less than they would have been using conventional means, in some cases being reduced from two years down to two days. Recruitment was also appropriate and plentiful for

the needs of the specific research, and subsequent participants have proven to be highly motivated.

While initially focussed on breast cancer, the Register was extended to research across all cancers to mark World Cancer Day in February, 2014.

To access Register4 members or their data, cancer researchers join Register4 as a researcher member, then submit proposals to the Register4 Access Committee for approval. All projects must be fully funded and approved by a Human Research Ethics Committee (HREC). The operation of Register4 has HREC approval.

Further information can be found on the website: www.register4.org.au.

Register4 was extended to research across all cancers to mark World Cancer Day in February, 2014. Jim and Lucas were some of the first men to join the Register. Register4 is now calling on more men and people with or without cancer to join to help fast track cancer research


Winter 2014

Tens of thousands of Australians have volunteered

to participate in cancer research via Register4.

Fast-track your cancer research

recruitment needs with Register4

RESEARCH FOR CANCERREGISTER

register4.org.auLEARN MORE

Register4 was established with seed funding from the National Breast Cancer Foundation.

While initially focussed on breast cancer, the Register was extended to research across all cancers to mark

World Cancer Day in February, 2014.

We Can All Help Find The Answers To Cancer

https://www.register4.org.au/

Australia is home to some of the world’s most venomous creatures: spiders, snakes and jellyfish with global infamy.

But in a glorious irony, the properties that make these venoms so deadly are precisely what makes them a force for good in medicine.

Dr John Miles, head of QIMR Berghofer’s Human Immunity Laboratory, says venoms are a seemingly perfect drug.

“The fast acting peptide fragments within venoms target vital molecules in our bodies and work like keys in a lock,” Dr Miles said.

“Venoms can turn biological pathways, cells and even whole organs on and off like switches.”

Given these unique abilities, a number of venom-based drugs are already in clinical trials for chronic pain and heart disease.

Now, thanks to the 2013 Rio Tinto Ride to Conquer Cancer through south-east Queensland countryside, Dr Miles has received funding to explore the ability of snake, cone snail, hookworm and jellyfish venom to control our body’s immune system, and potentially play a role in cancer treatments.

“If venom based drugs can be harnessed to control immune system function, we could open treatments for cancer and across a plethora of human diseases,” Dr Miles said.

“Just like a volume knob on a stereo, we could turn the power of the immune system down to one, to

silence autoimmune disease and turn it all the way up to

11, to kill cancers.”

Dr Miles’ study is one of a series of new research projects which received funding from the 2013 Rio Tinto Ride to Conquer Cancer.

More than 1236 riders helped raise more than $4.2 million for QIMR Berghofer in the third annual ride on 17–18 August last year.

Other projects funded by the 2013 Ride include research into:

• Individualised treatments for blood cancer

• New strategies to detect and treat brain cancer

• Patterns of care and quality of life for pancreatic cancer patients

• Combination therapies for melanoma

• A potential new treatment for prostate cancer

• Blocking breast cancer’s spread by binding a drug to the tumour surface

• Provoking an immune reaction in cancers

• Identifying new targets to stop the spread of lung cancer

The 2014 Ride will be held on 16-17 August 2014. To ride in the 200 kilometre two-day cycle event, be part of a support team, or make a donation, visit www.conquercancer.org.au

Dr John Miles hits the road for the 2013 Rio Tinto Ride to Conquer Cancer.


Winter 2014

The Perfect Poison

http://www.conquercancer.org.au

Professor Lyn Griffiths, the new Executive Director of QUT Institute of Health and Biomedical Innovation (IHBI), is driving the institute’s focus on treating disease based on an individual’s genes.

“The future of medicine is going to be personalised medicine, where treatments are based on the genes and genetic mutations you are carrying,” said Professor Griffiths.

Professor Griffiths’ research is seeking the genetic basis of some of Australia’s most debilitating health concerns: migraines, cardiovascular disease and cancer.

“Migraines are of particular interest to me because the World Health Organisation lists them as one of the top 20 disabilities and the most common neurological problem, yet there is significantly less migraine research taking place compared to things like cancer,” said Professor Griffiths.

About 12% of Australians are affected by migraines. There are two main types of migraine: migraines without aura that cause headache, nausea, vomiting and sensitivity to light and sound; and migraines with aura, which affect about 30% of migraine sufferers or about 4% of Australians. During a migraine with aura, sufferers can experience visual distortion, loss of sight, muscle weakness or paralysis, speech or language problems, tingling and dizziness. It has even led to coma and death in extreme cases.

Most migraine sufferers must take time off work and study during an attack, impacting productivity, and often require medical treatment, costing hundreds of millions of dollars in healthcare.

“Migraines are complex because in addition to genetic factors, there are triggers like certain foods, stress and perfumes. And three times more women suffer

migraines, which tend to begin in puberty, indicating that hormones also play a part,” said Professor Griffiths.

There are four key elements to Professor Griffiths’ search for personalised migraine treatment: using advanced genomic research techniques, collecting samples from large populations, developing diagnostic services, and translating research into treatments.

Advanced genomic research techniquesProfessor Griffiths and her team of 23 researchers recently relocated to IHBI, where they are focused on molecular medicine. Using specialised equipment purchased with assistance from Therapeutic Innovation Australia, an initiative of the Australian Research Council, the team uses advanced genomic research techniques to identify which genes play a role in a person’s susceptibility to disease.

Professor Griffiths and her team start with DNA and RNA samples and use them to study single gene expression, whole genome expression, mitochondrial DNA and genomic DNA gene variation. These genetic identification techniques can be applied to various disorders providing that well-characterised population samples are available for analysis.

Genetic sample collection“Good research starts with good data, so I’m conscious of building an excellent library of samples,” said Professor Griffiths. To do this, she and her team have gathered large collections of samples from people with particular diseases, such as breast cancer and migraines. Additionally, they have collected samples from the genetically isolated population of Norfolk Island.

The Norfolk Islanders are an excellent source of genetic data because they come from a small group of founders, specifically Caucasian male and Polynesian female founders who originate from a famous historical event: the mutiny on the Bounty.

As Professor Griffiths points out, “They have been isolated for many generations and share the same diet, water and lack of air pollution, so environmental influences can be largely ruled out of our examination of their genes.”

To date the Norfolk Island genetic data has been valuable in Professor Griffith’s examination of migraines, and cardiovascular disease risk factors such as high blood

pressure, cholesterol, and Body Mass Index (BMI) and she is now undertaking DNA studies for glaucoma genes.

Diagnostic servicesProfessor Griffiths’ group assists hospitals, clinics and General Practitioners to treat their patients’ migraines by offering diagnostic services that identify the genetic cause of the severe migraine and migraine-related disorders. This helps them to determine if available treatments will be effective, as some severe migraine types respond to particular therapies and some do not. Diagnosis is also important in young children who suffer severe migraine sub-types, such as familial Hemiplegic Migraine.

“There are cases of four to five year olds suffering severe migraines, which look like seizures or other neurological disorders. It’s really important that we diagnose these so they can be treated correctly,” said Professor Griffiths.

Translating research into treatmentsProfessor Griffiths’ vision for the future is that a migraine sufferer will visit their GP to have a diagnostic test that identifies the gene responsible for their migraines. The patient will then be prescribed the right dosage of the right drug to effectively treat their individual migraine type.

Professor Griffiths’ contribution to this vision is likely to be available by the end of 2014, when she anticipates she will add another treatment to the suite of treatments available for migraines.

“We are in the final stages of clinical trials for a vitamin therapy that has been shown in past trials to reduce the frequency and severity of migraines in those who carry a particular gene mutation,” said Professor Griffiths.

“This is just the beginning of our contribution to personalised medicine,” said Professor Griffiths. As she and her team continue to grow at the Institute of Health and Biomedical Innovation we can expect continued research into the genetic basis of migraines, cardiovascular disease and cancer, which in turn will allow therapies to be developed tailored to an individual’s genes.

IHBI Executive Director, Professor Lyn Griffiths, has developed a treatment for severe migraines that is in the final stage of clinical trials


Winter 2014

Molecular Medicine Provides Personalised Migraine Treatment

Published 23 April 2014, Australian Financial Review online.

It’s not sexy, but research into the way our health system treats patients could be just the tonic the sector needs.

A year ago this month, the McKeon Review into Health and Medical Research outlined how we can get better bang for the bucks – up to $4.8 billion – Australian governments spend on health research each year. We don’t have to spend more to get more value, at least not in the short to medium term. What we do have to do is better direct and leverage investments already underway.

The McKeon Review calls for embedding research into the health system. This makes sense. Health is a massive industry that already accounts for 9.5 per cent of GDP. It should have an R&D arm to help plot future direction.

So what needs to change to make this happen? We have to integrate research into health delivery. Australia is comparatively light on in terms of health services researchers and health economists. In the last round of National Health and Medical Research (NHMRC) grants only around 4 percent of grants went to health services research. And yet it is exactly this kind of research that will be vital to ensuring our system will continually improve without becoming unaffordable.

Now no-one makes racy television programs about health services research.

We are not talking about curing cancer here and it won’t deliver the breakthrough treatment for Alzheimer’s either. But that doesn’t mean it’s not vitally important.

The Australian Clinical Trials Alliance has been collating examples of high impact, non-commercial clinical trials that have led to improvements and savings in anaesthesia, intensive care management, and nephrology (dialysis/kidney failure) to name a but a few. These clinical trials are great examples of research into the way things get done in health, research that can provide benefits for patients as well as containing and even reducing costs.

On the ageing front, researchers in Victoria have shown people with cognitive impairment are much more likely to have secondary complications when in hospital, such as pneumonia and urinary tract infections, than their unimpaired counterparts. Yet few if any hospitals check for cognitive impairment on admission and adjust treatment accordingly, or provide training to their staff in how to manage cognitively impaired patients. There is some big scope for improvement in this one area alone, especially when one factors in the expected growth in dementia associated with an ageing population.

Nursing and primary care can also benefit from research. Recent research from Griffith University Queensland showed catheters can be safely kept in a patient’s arm for longer than what is currently standard practice. This could translate to huge savings in nursing time and therefore costs.

So how can a country which finds itself in an increasingly tight fiscal environment drive more research like this that can result in both cost savings and improved patient care?

The main source of funds for medical research is the National Health and Medical Research Council. The McKeon review recommends between 10 to 15 per cent of the NHMRC budget be allocated to priority areas for ‘top-down strategic research’. That still leaves plenty of scope for investigator-led activity while sharply increasing the likelihood of research that will boost efficiencies.

A national strategic plan for health and medical research would help ensure our health system delivers value for money.

As a former health minister, Prime Minister Tony Abbott knows the stakes are high.

The Prime Minister should seize this opportunity to do for the Australian health system what Paul Keating did for superannuation, and consequently the financial services industry. Let’s hope he does just that through a continued but recalibrated investment to research in this year’s Federal Budget.

Elizabeth Foley is Chief Executive Officer & Managing Director, Research Australia.



Winter 2014

Health System Research The Right Tonic For Patient Care

RESEARCHAUSTRALIAAN ALLIANCE FOR DISCOVERIES IN HEALTH 19Research Australia grassROOTS WINTER 2014

ATTENTION ALL MEMBERS!Have you updated your information on the Research Australia website for the new Search for Research functionality yet?

As you know we are launching a public service via our website which will allow the community to find corresponding organisations that research/support any and all areas of research with just one click.

Ensure you have updated your “areas of research” in your member profile to ensure your organisation can be found by whomever would like to connect with your organisation regarding a specific area of health or medical research.

Contact Danijela via [email protected] for more information.

mailto:[email protected]


Do you know someone who...

.... is making an impact early in their research career?

.... constantly advocates for health and medical research?

.... is a philanthropic hero?

.... has been an exceptional leader and pioneer for many years?

Then vote for them today: nominations are now open for the 2014 Research Australia Awards!!

20

Winter 2014

RESEARCH AUSTRALIA AWARDS Nominations Now Open: Vote For Your Hero Today!


These prestigious Awards, now in their 12th year, recognise and celebrate leaders who have made significant contributions to health and medical research in Australia. Awards are presented across the categories of discovery, advocacy, philanthropy and lifetime achievement, and for the first time recognising achievements in health services research.

In 2014 the following Awards will be presented:

Griffith University Discovery Award recognises an early career researcher (anytime from qualification but no more than 5 years past PhD or research higher degree) whose paper/patent/discovery has already demonstrated its importance or impact.

Advocacy Award recognises an Australian from either the media, celebrity or a member of the community who has raised community awareness about the benefits of health and medical research.

Macquarie Group Foundation Great Australian Philanthropy Award recognises and encourages personal philanthropic donations over a period of time by an individual or family to Australian health and medical research.

Leadership in Corporate Giving Award recognises outstanding leadership by a corporation or business in giving to and supporting health and medical research.

NSW Government Health Services Research Award presented for the first time in 2014, this Award is for an individual who has made an outstanding contribution to the field, provided research leadership, undertaken research that has led to a significant improvement in healthcare, and/or has championed the development of the health services research field.

The Kids’ Cancer Project Lifetime Achievement Award honours a significant lifetime commitment to supporting and promoting health and medical research.

The Peter Wills Medal recognises an Australian who has made an outstanding contribution to building Australia’s international reputation in the area of health and medical research, and for harnessing government, research, industry and philanthropic collaborations to promote better health.

Nominations must be received by COB on Tuesday 1st July 2014.

The 2014 Research Australia Health & Medical Research Awards will be held on 5 November at the Pier One Sydney Harbour Hotel. Further information is available on our website http://www.researchaustralia.org/events/category/2014-awards-dinner

Top L–R

2013 Griffith University Discovery Award Winner, Dr Franziska Bieri | Infections Disease Epidemiology Unit, University of Queensland

2013 Bupa Advocacy Award, accepted by Geoff Coombes on behalf of award winner, Mark Beretta, Sunrise Sports Presenter

2013 The Kids’ Cancer Project Lifetime Achievement Award winner, William D Ferris, AC, Champ Private Equity Group with Col Reynolds & Peter Neilson, The Kids’ Cancer Project, and Prof Christine Bennett, Chair, Research Australia

Bottom L–R

2013 Victorian Government Leadership & Innovation Award winner, Simon McKeon, AO, Macquarie Groups with Prof Christine Bennett, Chair, Research Australia

2013 The Peter Wills Medal winner, Prof Paul Zimmet, AO, Baker IDI Heart & Diabetes Institute, with Peter Wills, Deputy Chair, Research Australia

2013 Leadership in Corporate Giving Award, accepted by Thea Phillips on behalf of Rio Tinto Ltd

Macquarie Group Foundation Great Australian Philanthropy Award Winner, Susan Alberti, AO, Susan Alberti Medical Research Foundation with Lisa George, Macquarie Group Foundation

21

Earlier this year Michael Kirby, AC CMG wrote this forward to a recent publication from Rare Voices Australia (RVA) which tells the rare disease story of 40 Australians who live with a rare disease.

“Every voice has a right to be heard by our leaders. The voices of people with rare diseases are no exception. These people are our fellow citizens and deserve equality in healthcare and research. These voices appeal to human love for one another. We should respond.” RVA founding patron, the Hon Michael Kirby AC, CMG

The most profound line is this simple quote is “we should respond”. The time has come for the Australia to recognise that there are over 1 million Australians who struggle every day for access to a diagnosis, health care, research and the support networks which other Australians take for granted.

RVA is responding. Formed as a result of a call from more than 200 participants at the ‘Awakening Australia to Rare Diseases’ symposium in 2011, RVA provides a strong common voice to promote health policy and a healthcare system that works for those with rare diseases. RVA works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare diseases in Australia. RVA is providing a unified voice for the 1.2 million plus people affected by rare diseases throughout Australia (6–8% of the population).

There are more than 8,000 rare diseases. A rare disease is any disorder or condition that is a life-threatening or chronically debilitating disease which is statistically rare, with an estimated prevalence of 5 in 10,000 or of similarly low prevalence and high level of complexity that special combined efforts are needed to address the disorder or condition.

RVA is campaigning for a National plan for Australians impacted by rare diseases. This would coordinate into one strategy: Research, Prevention and diagnosis, treatment and care, information and planning. The diseases are all different but the key shared messages remain the same. Access to a co-ordinated approach in these areas is crucial to improving health outcomes for people living with a rare disease.

Rare diseases are a major public health issue for Australia. They result in significant burden and expense, both for those living with a rare disease and the healthcare system. Yet policies and healthcare services fail to adequately respond to the needs

of those affected by a rare disease. Rare diseases are not recognised as a collective group in Australia. There are currently no methods by which rare diseases in Australia can be identified or monitored, meaning there is no data with which to plan services, inform policies or support research. The Office of Population Health Genomics has led a collaborative approach to consider the current rare diseases landscape in Australia. Over the past two years extensive information has been gathered through national coordinating committees, international meetings, engagement with those from across the rare disease sector and detailed literature reviews. This information was used to develop a scoping paper on the need for a National Rare Diseases Plan as requested by the Australian Health Ministers Advisory Council in 2011. The Scoping Paper reads, in part:

“In recent years there has been a significant shift in the way rare diseases are viewed in Australia. The need for a collective understanding of the 5,000 to 8,000 individual rare diseases was first highlighted in 2007, when the general practitioner sector called for a coordinated response to rare diseases. Since this time momentum has gathered, and opinion leaders have come together to consider what is needed nationally to effectively and efficiently respond to rare diseases.”

“The overwhelming message is that rare diseases should be viewed as a collective group of diseases, and a National Plan is needed. The pressing need for a collective view of, and clear definition for, rare diseases also recently received bipartisan support from the Australian Government House of Representatives. However, without the development of a National Rare Diseases Plan, there is no mechanism by which Australian governments can take a collective view of rare diseases, or promulgate a definition throughout the healthcare system.”

“There is growing recognition of the needs for best practice clinical guidelines and processes that support integrated, coordinated and multidisciplinary care for rare diseases. In addition, the International Classification of Diseases (ICD)-11 is due for release in 2015 and includes greatly expanded coding for rare diseases.”

The adoption of ICD-11 in Australia will provide the capacity to report on rare diseases across health nationally, and compare internationally. This will be a milestone for rare diseases. “National and international rare disease research and clinical networks are being established, which have the potential to significantly strengthen Australia’s capacity to respond to rare diseases effectively and efficiently. Given the rarity of individual rare diseases, such networks are essential to link researchers and clinicians, and share knowledge.” Australia is a member of the International Rare Disease Research Consortium (IRDiRC) and Orphanet. IRDiRC has a goal to find 200 new therapies for rare diseases by 2020. Since its inception in 2010 this number is already up to 105. This alone shows what is possible with good will, co-operation and a global response.

In order to progress the adoption of a National Rare Disease Plan, Rare Voices Australia has held two successful events in Canberra. After the event in March 2014, there was a bipartisan call for a National Rare Disease Plan and a National Rare Diseases Registry from Steve Irons MP and Jill Hall MP. Since then other MP’s have given speeches in support of these two initiatives and a Friends of Rare Diseases group has been formed.

Rare Voices Australia has responded to the voices of the Australian rare disease community and will continue to advocate for a National Rare Diseases plan and registry.

Rare Voices Australia Parliamentary Event 6 March 2014.


Winter 2014

At Last A Voice For The Australian Rare Disease Community!

What do you know about preventing one of the highest predicted causes of death in Australia? Is it to avoid smoking and sunburn to protect yourself against cancer? Do you remind yourself to exercise more regularly and eat healthy foods to prevent heart disease? What about keeping up with those early detections like breast, prostate and bowel screening, or cholesterol and blood tests?

Those things are definitely useful. But what about preventing the major mental health problem affecting Australians – depression? How long is your list of practical preventions? Mental illness is predicted by the World Health Organisation to be the second leading cause of death in Developed countries by 2020. So how much knowledge, if any, do you have to protect yourself against it?

Mental health has not improved in our country over the past 15 years and an increasing number of people are seeking treatment. Australia spends an increasing $6 billion per year on mental healthcare and services, which has improved access to treatment, but the prevalence of mental disorders appears unchanged. Australia needs to act now.

Australian Rotary Health (ARH) has been one of the first organisations in Australia to recognise the importance of mental disorder prevention. In 2013 they hosted a symposium entitled ‘Prevention of Mental Disorders across the Lifespan: Setting New Directions for Research and Implementation’ which brought together Australia’s top experts on the prevention of mental disorders. A major message from the ARH symposium was that prevention is needed, prevention is possible, but it needs more research.

Evidence presented at the Australian Rotary Health symposium suggests that prevention is particularly promising for common mental disorders such as depression and anxiety. There is evidence that: parenting interventions can prevent mental health problems in children; school-based programs can prevent anxiety and depression in adolescents; cognitive behaviour therapy-based programs can prevent depression and anxiety in tertiary students; interventions targeting job stress can prevent depression in adults; and psychological planning for retirement can prevent depression in older people. The internet also offers a promising mode of delivery for mental disorder prevention programs.

Experts at the Australian Rotary Health symposium launched a new organisation called ‘The Alliance for the Prevention of Mental Disorders’ which aims to advocate for further research and cooperative work in mental disorder prevention. The Alliance shared ideas of what can be done now in the hope of addressing neglected fields of mental health research and provoke interaction between researchers, practitioners and policy makers.

Australian Rotary Health is acting quickly by implementing three new initiatives in 2014 to further its support for the prevention of mental disorders:

• The Commitment of new funding for research in the area of mental disorder prevention – one Postdoctoral Fellowship and five Research Project Grants.

• Working with Rotary clubs nationally to run public community forums to inform Australians of practical ways they can personally prevent mental disorders.

• In conjunction with ‘The Alliance for the Prevention of Mental Disorders’, ARH will distribute an electronic newsletter which will address current research findings from a number of expert researchers within pre-natal, childhood, adolescence, adulthood and geriatrics. If you would like to receive the email newsletter, please email [email protected].

The Alliance for the Prevention of Mental Disorders formed at the Australian Rotary Health Symposium at Australian National University in May 2013


Winter 2014

Leading Australia In Priority Research For Mental Disorder Prevention


The Mater Mothers Hospital in collaboration with Professor Leonie Callaway from the Royal Brisbane and Women’s Hospital are inviting expectant mothers who struggle with their weight to volunteer for a new study to investigate the effects of probiotics to prevent gestational diabetes.

Mater Researcher Professor David McIntyre said the world-first study, being run at Mater Mothers’ Hospitals and Royal Brisbane and Women’s Hospital, would involve more than 500 pregnant women patients over two years.

“Gestational diabetes is a common complication of pregnancy, especially in women who are overweight or obese prior to conceiving,” Prof McIntyre said.

“At Mater Mothers’ 10 to 13 per cent of our maternity patients—about 1,000 women a year—are treated for gestational diabetes.

“We have a good treatment program for them but we’d rather prevent them from developing gestational diabetes in the first place,” he said.

During pregnancy the placenta produces hormones which are essential to keeping the pregnancy progressing and which steadily rise as the pregnancy progresses. These hormones also partly stop insulin working.

Gestational diabetes is caused when the mother’s body does not produce enough insulin to fully use the sugars from the diet causing high blood sugar levels.

About five to nine per cent of pregnant women will develop gestational diabetes around the 24th to 28th week of pregnancy.

While it occurs during pregnancy and usually goes away after the baby is born, complications can include heavier babies with more body fat, complications in delivery and an increased risk of both mother and baby developing diabetes later in life.

“Ideally, we would like to find a treatment to prevent gestational diabetes because at the moment there is no known way of preventing this disease,” Prof McIntyre said.

A recent study from Finland offers some hope. In this study, a group of women with BMI ≤ 25.0 were given pills with probiotics (that is, bugs that are good for your health) during their pregnancy. This improved their blood sugars and 62% fewer women receiving probiotics developed diabetes in pregnancy than in the control group.

The women and their babies experienced no bad effects of the treatment. Mater is running the trial to see if the probiotics have the same effect on blood sugar levels in pregnant women with a BMI of 25.0 or more in Australia.

Women at risk for gestational diabetes include those over 40, with a BMI over 25, previous elevated blood glucose level, family history of diabetes, certain ethnic groups, women who have had GDM in a previous pregnancy, previous large baby >4500g, women with polycystic ovarian syndrome or women taking certain medications e.g. corticosteroids, antipsychotics.

Gestational diabetes is currently treated with a modified diet and increased physical activity or with insulin to keep the blood sugar levels normal.

“The results of our study may give us a safe, easy and cheap way of preventing gestational diabetes and minimising the effects it has on mother and baby,” Dr McIntyre said.

Mother of five, Sarah Caiulo participated in the trial for her last pregnancy.

“I never felt well with my previous pregnancies and my BMI increased. As your risk of gestational diabetes increases with each pregnancy I thought any research that provides a positive outcome for mothers and babies is worthwhile participating in,” she said.

While Sarah didn’t have gestational diabetes previously she found she also didn’t have it during her recent pregnancy

and baby Noah was born at 37 weeks on 1 February 2014 weighing 3.7kg.

“While I don’t know if I was on the placebo or probiotic, this was my only pregnancy that was different and it was the healthiest I’d felt. I didn’t gain weight, my digestion improved and I didn’t have any reflux,” Sarah said.

Sarah found the trial easy taking capsules at home and only three visits to Mater for blood tests and glucose levels.

“The care at Mater was fantastic, non-invasive and didn’t take much time. The staff were caring and considerate. If the research trial does prevent and decrease the rate of gestational diabetes it can only be a positive so I encourage pregnant women who meet the criteria to participate,” Sarah said.

Over 10,000 Queenslanders are born at Mater Mothers’ Hospital each year—making it the busiest maternity hospital in Australia. Mater treats 300,000 sick babies, children and mothers from Queensland and Northern New South Wales each year.

The double-blind randomised control trial has half the women on probiotics (tablets with good bacteria) with the other half on a placebo (inactive pills). Participants are involved are ‘blinded’ to the type of pill each receives to avoid bias.

Expectant mums with a BMI of more than 25 kg/m2 are welcome to take part in the study. To calculate your BMI use a calculator and type in your weight ÷ height ÷ height (For example, Weight 65 kg and height 1.65m = 65 ÷ 1.65 ÷ 1.65 = 23.8). Participation is open to all Brisbane women over 18 years old and who are under 16 weeks gestation with a BMI over 25 and no pre-existing conditions that affects glucose metabolism.

The trial involves women taking a capsule from the 16th week of the pregnancy every day until the birth of the baby as well as providing a few routine medical samples. If you are delivering at the RBWH, we would like to collect a sample of blood from the umbilical cord and your placenta. In the first few days following your delivery we will ask permission to weigh, measure and do a body composition (fat, muscle) measured


Winter 2014

Australian First Gestational Diabetes Study

“We have a good treatment program for them but we’d rather prevent them from

developing gestational diabetes in the first place,”

on your baby using a specialist machine called a ‘Peapod’.

If you feel this research could benefit you or someone you know, or you require further information please contact the Mater clinical research coordinator Anne Tremellen on 07 3163 6312 or [email protected] or visit www.matermothers.org.au.

Alternately if you are delivering at the RBWH contact Katie

Foxcroft on 07 3646 5164 or [email protected]).

A third site has just opened up at Redcliffe hospital, contact Sharney Grant on 07 3883 7552 or [email protected] Foundation links community and philanthropic support to Mater Health Services and Mater Research. Sarah Caiulo and

baby Noah.



http://www.matermothers.org.au



A partnership between the University of Sydney and the NSW Government will deliver much needed mental health hospital beds and a range of services, including research beds, in a new purpose-designed building supporting rehabilitation for up to 1900 people experiencing mental health issues each year.

The Missenden Mental Health Unit is a $67 million project co-funded by the NSW Government and the University to be completed by the end of 2014.

Dignitaries including the NSW Minister for Mental Health, the Hon. Kevin Humphries MP, visited the Camperdown site today for a “topping out” ceremony celebrating reaching the highest point in the construction of the project.

The new facility will deliver inpatient and community-based mental health services for the Sydney, Leichhardt and Marrickville local government areas. It will also provide regional outreach specialist consultation services for all of NSW from its Missenden Road, Camperdown location.

Unique in Australia, the unit will also include dedicated research beds under the auspices of the University of Sydney’s Brain and Mind Institute (BMRI), enabling innovative mental health services to be trialed and developed. The University’s Centre for Eating and Dieting Disorders (CEDD) will also have a research presence within the new hospital. The University has world-class academics in eating disorders

leading this research to improve prognosis, outcomes, and care while contributing to the scientific literature in this field.

University of Sydney Deputy Vice-Chancellor (Research), Professor Jill Trewhella said: “The decision to build this facility represents an entirely new approach to research, education and training in mental health.”

“We believe the partnership between the University, through the BMRI, and the NSW Government, through its local health district, will significantly foster research

translation, encourage innovation in health services and promote health care and research leadership in NSW,” Professor Trewhella said.

“Mental health issues impact individuals and their families in a variety of ways. We need to be doing more to prevent and alleviate these impacts, and in doing so we contribute to the quality of life and productivity of our communities. We look forward to the benefits that this partnership will bring.”

More than 60,000 people living in the Sydney, Leichhardt and Marrickville local government areas experienced mental health issues in 2013, with nearly 700 people treated at Royal Prince Alfred Hospital for mental health and related illnesses.

BMRI Executive Director, Professor Ian Hickie, said: “This is a new and exciting phase for the BMRI. Through this facility, we will be able to push the frontiers of knowledge in neuroscience and mental health, and create partnerships that foster the translation of quality research into improved healthcare. Our major focus will be on much improved care for young people experiencing their first episode of major mood or psychotic disorders.

“Once the new unit is operational, we will create an innovative research and teaching environment, spanning mental health and physical care particularly in the areas of eating disorders, child mental health and depression. Each of these areas are ripe for new innovative research programs, particularly in purpose-designed sub-acute care environments.

“The new Missenden Mental Health Unit will provide a world class collaborative research and learning environment in which we can lead research that meet community needs,” Professor Hickie said.

Professor Ian Hickie, Executive Director of the BMRI; Dr Victor Storm, Clinical Director of Mental Health, Sydney Local Health District; Professor Jill Trewhella, Deputy Vice-Chancellor (Research) at the University of Sydney; and The Hon. Kevin Humphries MP, NSW Minister for Mental Health.

More than 60,000 people living in the Sydney, Leichhardt and Marrickville local government

areas experienced mental health issues in 2013, with

nearly 700 people treated at Royal Prince Alfred Hospital

for mental health and related illnesses.


Winter 2014

New Mental Health Building Will Deliver Unique Model Of Care


Winter 2014

Our genes make us who we are.

Genetic differences between people account for differences in appearance, but the impact is more than skin deep. These differences also show themselves in the diseases we develop or how we respond to treatment.

Treatments that are as unique as youYour genetic code, or genome, is the set of instructions that makes every cell in your body. Personalised medicine involves diagnosing diseases or matching patients to existing treatments based on their genetic code, or the genetic code of their disease. Personalised medicine relies on ‘genomics’ – the study of the genome.

Institute researchers are finding innovative ways to detect and discover disease, as well as ensure it has useful outcomes for patients. Our researchers are working to:

• improve the technology for reading and analysing a patient’s genome;

• discover the genes involved in disease to choose the best treatments and predict treatment responses; and

• enable clinicians and patients to use this information to make the best treatment decisions.

Leading the way with genomic medicineProfessor Liam O’Connor has led the institute’s personalised medicine program since 2011.

“Not only will personalised medicine make health care more efficient and effective, it will make a real difference to patients on many levels,” Professor O’Connor said. “By generating a ‘molecular fingerprint’ of their disease, say for someone who has cancer or an immune disorder, we can see which genes are involved and pick treatments that we think will work effectively, or avoid ones we know won’t work for them.”

In 2012, the institute founded The Ian Potter Centre for Genomics and Personalised Medicine, the first centre in Australia dedicated to developing the technology and knowledge necessary to make personalised medicine a reality. The centre is a joint collaboration with the Murdoch Children’s Research Institute (MCRI).

Professor Andrew Sinclair from MCRI said research was needed to drive clinical innovation. “Through this centre we are using highly specialised equipment to process patient samples and analyse their genetic composition so that, in the future, doctors can use this knowledge to match their profile to the best treatment plan,” he said.

Fighting cancer with precisionPersonalised medicine is as much about avoiding the wrong treatment as it is about picking the right one.

As part of that research, Professor O’Connor and his team are investigating the anti-cancer drug Cetuximab, which is used to treat some bowel cancers.

“Not all patients who receive Cetuximab respond to it,” Professor O’Connor said. “We are looking for a genetic explanation – something in the genome that makes a patient more or less likely to respond.

“Prescribing a treatment that may not work means the patient loses precious time and suffers unnecessary side-effects. Instead, we would test them first, identify if they are unlikely to respond, and hopefully get them onto another, more effective treatment much earlier.”

Connecting the lab with the clinicInnovative health care and information systems are needed to make genetic medicine a reality.

This is where the Melbourne Genomics Health Alliance comes in. Launched in February, the Melbourne Genomics initiative has a five-year vision to implement genetic medicine into everyday health care.

The Walter and Eliza Hall Institute is one of the founding partners of the new alliance, along with Melbourne Health, the Royal Children’s Hospital, The University of Melbourne, CSIRO, MCRI and the Australian Genome Research Facility.

Associate Professor Clara Gaff, Institute researcher and Melbourne Genomics program leader, said the initiative put patients’ needs first to make personalised medicine a reality in Victoria.

“We are working to increase patient access to genome sequencing and enable the ethical sharing of data with researchers and across hospitals,” Associate Professor Gaff said. “This means making a seamless link between patients’ information being available for treatment choices, scientists using the information to drive new research into disease and treatments, and the research findings being used to improve clinical care.”

Researchers are finding ways to diagnose disease and tailor treatments based on your genome. This image shows strands of DNA – our genetic code – being replicated, a process that can introduce small variations and changes.

Personalised Medicine: The Future Of Health Care In Australia

Why do older people with dementia often become aggressive or agitated?

It is a question that has puzzled researcher Professor Stephen Gibson for some time.

Professor Gibson, in charge of the clinical research arm of the National Ageing Research Institute (NARI) based in Melbourne, has been leading a world-first double blind placebo controlled trial to see whether pain could be a cause of some of the behavioural and psychological symptoms (BPSD) in older people with dementia.

“There is growing international consensus that these behaviours may be due to some unmet need which cannot be verbalized by people with dementia,” Professor Gibson said.

With funding initially from the National Health and Medical Research Council, Gibson began recruiting people to the study. By the end of this third year there will be 90 people, all over 65 years old, with BPSD and pain in the trial.

“The current treatment to improve BPSD is anti-psychotic and anti-anxiety medication,” said Professor Gibson.

“As pain is common in the elderly, we are looking at whether pain relief can improve behaviour that is difficult to manage, and perhaps even reduce the occurrence of agitation and aggression in persons with pain and dementia.”

The residents are closely monitored during a six-week trial that involves a two-week baseline phase, a two-week intervention phase – where they are randomised to receive regularly either placebo, paracetamol, or paracetamol and codeine- and a two week post-treatment phase.

The study is generating interest across the world and is hoping to attract new funding to broaden the work.

“Our focus with this new funding will be to expand the study to examine the effect of providing analgesics on severe depressive symptoms in people with dementia,” said Professor Gibson.

The pain research is the latest in a line of innovative research projects conducted by NARI over its 40-year history. It was set up in 1975 to be the centre of excellence in Australia for research into ageing and improving the lives and health of older people.


Winter 2014Could Pain Cause Behavioural Problems In Older People With Dementia?

Since then it has been at the forefront of some of the most significant and innovative changes in aged care practice. These include helping to establish memory clinics to ensure better diagnosis and care of people with dementia, aged care assessment services to enable better targeted care to those with highest needs in order to keep people out of residential care for as long as possible, as well as developing falls prevention guidelines that are used across Australia.

For Professor Gibson’s team, the emphasis has always been on applied clinical research that can be directly translated into community and health care settings. We literally bring research to life by involving older people, their carers and health workers,” he said.

Today the clinical research division focuses on improving early detection of disease by identifying important risk factors, trialing new treatment strategies and evaluating current aged care service provision to put in place best evidence based practice.

One of the reasons the team focuses on pain is that it is often hard to observe and diagnose in older people, especially those with dementia.

“Whatever NARI can do to make a difference for people with dementia will be a significant improvement,” he added.

Other current NARI studies into dementia include a review of tools used to assess in the early diagnosis of dementia in older indigenous people living in urban and rural Victoria. Working in partnership with Alzheimer’s Association (Victoria), NARI has adapted the Kimberley Indigenous Cognitive Assessment tool (KICA) to reflect differences between indigenous people living in urban and regional communities. The tool was tested and validated in Mildura and Melbourne and is now available on the NARI website.

“It is an effective screening tool that can be used anywhere across Australia,” said Professor Gibson.

Another pain in dementia project is helping carers detect both the presence and severity of pain in their patients.

“Older people with dementia often lose the capacity to report pain,” explained Professor Gibson.

“We’ve looked at whether behaviour commonly seen in older people with pain – like facial grimaces and moaning – can be recognised and understood by their carers.”

Carers were provided with a three-different types of behavioural observation pain rating scales and were asked to assess older residents in aged care facilities. The scores on these scales were then compared to the self-reported level of pain from the resident. Results show that by using these scales, carers were better able to detect both the presence and absence of pain as well as the severity of pain.

“Being able to assess the severity of pain in persons with advanced dementia will be of great help in determining the most appropriate analgesic agents for this highly vulnerable group” said Professor Gibson.

For the moment, though, he is excited about the possibilities that the pain relief in older people with dementia project holds. He is hoping to attract further funding to expand the trial to include the effect of anti-depressants on pain severity.

“What we can say is that pain, depression and BPSD appear to be strongly linked in people with dementia.”

“It is still too early, though, to say whether doctors would be better off treating the pain or the depression together or separately,” he warned.

“But the results from this project could be instrumental in a paradigm shift for the use of analgesics as a treatment approach for agitation and other BPSD”, said Professor Gibson.

NARI’s team is still looking to attract recruits to the study. For further information, contact NARI on [email protected]

NARI researchers Professor Stephen Gibson (back) with Steven Savvas and the pain relief medicine they are trialing.

.


“Our focus with this new

funding will be to expand

the study to examine

the effect of providing

analgesics on severe

depressive symptoms in

people with dementia,”

Living long healthy and fulfilled lives is a goal for many; however there is a barrier that more of us are increasingly facing, which could mean that goal is never reached. Globally, 35.6 million people have dementia, and this number is expected to triple by 2050.

University of Wollongong (UOW) researchers are focusing on dementia from both sides: by improving the daily lives of people with

dementia, and combatting the illness at a molecular level. People whose lives have been affected by this fatal condition are supporting their research.

While the risk of dementia increases with age, it is not a natural part of ageing and there is currently no cure. It is not a single illness, rather dementia is an umbrella term describing a syndrome associated with more than 100 different conditions that are characterised by the impairment of brain functions such as language, memory, perception, personality and cognitive skills. Alzheimer’s disease is the most common cause of dementia.

This distressing illness is presenting a significant challenge to health systems across the world, and a lot of time and money needs to be spent on not only researching a cure, but also ensuring that our built environment caters to patients’ needs.

In Australia, there are currently more than 320,000 people living with dementia and is one of the fastest growing sources of major disease burden in Australia that will overtake coronary heart disease in its total wellbeing cost by 2023.

Due to the nature of the illness, people with dementia are easily disoriented and confused by their surroundings, which can be helped by simplifying building design. To improve the quality of life for people living with dementia in Australia, UOW Professor Richard Fleming, whose interest in dementia comes from working as a psychologist with the elderly for over 30 years, is working to develop a service for designing dementia-friendly hospitals and aged care facilities nation-wide.

The Netherlands is currently leading the way on this, and taking it one step further. It is home to Europe’s only purpose-built village inhabited entirely by older people with dementia. Hogewey is a closed village where residents have a real sense of

freedom as they can visit the salon, eat at the restaurant and shop for groceries. The only difference is that all of the employees are carers. Because of their uncomplicated surroundings and their sense of freedom, residents are more active and require less medication compared with traditional aged care facilities.

Professor Fleming in his role as Director of the NSW/ACT Dementia Training Study Centre at UOW was awarded over $200,000 this year by the Federal Department of Health and Ageing towards improving acute hospital services for people with dementia. The study will involve 25 hospital-based projects across Australia.

“It is very encouraging to see the importance of the built environment being recognised with this funding. There has been good quality research carried out on designing residential care environments for people with dementia, but the hospital environment has been largely neglected,” Professor Fleming said.

“This project will enable us to apply the knowledge that we have and set the stage for future research into designing for the special needs of people with dementia undergoing the stresses of hospital admission.”

Retired Wollongong dairy farmer, Richard Miller knows only too well the devastation wrought by dementia as his wife, Janet, died from Alzheimer’s disease. After the sale of his family’s dairy farming land, Mr Miller turned his attention to philanthropy, focusing on supporting medical research.

“When my wife passed away from Alzheimer’s, I knew that I had to do all I could to help find a cure,” My Miller said.

With his strong personal interest in dementia, Mr Miller established the Summer Scholarship Program to fund projects on dementia at UOW’s Illawarra Health and Medical Research Institute (IHMRI), providing invaluable aid in the fight against Australia’s dementia epidemic, and helping students gain access to university who don’t have the financial resources to do so.

Researchers at IHMRI are studying ways to help combat the illness at the molecular level.

Professor Brett Garner and his team are currently investigating the function

of a protein called ABCA7 in protecting the brain. The team have recently discovered that ABCA7 can slow down the accumulation of amyloid-beta peptide in the brain, a peptide that is widely believed to be a major causative factor in Alzheimer’s disease – the most common cause of dementia.

By deleting the ABCA7 protein in a mouse model of Alzheimer’s disease, they showed that the disease pathology significantly worsened, indicating that the protein is indeed involved in regulating amyloid-beta peptide levels and Alzheimer’s disease pathology.

“This is the first study to describe the impact that a loss of ABCA7 has in the brain in context of Alzheimer’s disease and helps us to understand why mutations in human ABCA7 confer increased risk for Alzheimer’s disease in the clinical setting,” Professor Garner explained.

“This opens up new avenues for us to study how amyloid-beta is removed from the brain and what therapeutic approaches may be used to promote this in the Alzheimer’s disease context.”

His next focus is to discover compounds that may selectively increase the expression of ABCA7 in the brain. While he can currently only speculate that these compounds will promote the removal of the harmful amyloid-beta deposits, his research data lends support to the general concept that any approach aimed at decreasing amyloid-beta and other unwanted materials could be helpful in the treatment of Alzheimer’s disease.

With dementia touching the lives of many across the globe, it is comforting to know that inroads are being made on not only helping to make the lives of people living with dementia better while they are in the grips of the disease, but that research is coming along in leaps and bounds.

As with all research initiatives, funding is the key to ensuring that we continue onward to find a cure.

To support Professor Fleming’s research project, please visit go.uow.edu.au/dementia

Professor Richard Fleming, Director, NSW/ACT Dementia Training Study Centre, University of Wollongong.


Winter 2014

Building Better Lives For People With Dementia

http://go.uow.edu.au/dementia


Winter 2014

Being diagnosed with cancer can be a traumatic experience. However, receiving news that the cancer you thought had been treated has returned can be heartbreaking.

Research led by University of Canberra associate professor in molecular and cellular biology, Dr Sudha Rao, is on the brink of making a major breakthrough to stop the spread of recurring cancer.

Dr Rao and her team are aiming to better understand how cells work at the genetic level and looking at preventing the spread of primary cancer cells. Their research has recently identified two target proteins that, if blocked, can neutralise the cells that spread primary cancer around the body.

“There is very little therapy to fight aggressive cancers such as breast cancer and the available treatments are harsh and in many cases, superficial and transient,” Dr Rao explains. “And once they recur, there is no treatment whatsoever. We are determined to fix that.”

Focusing on breast cancer, which remains the leading cause of cancer-related death in women, Dr Rao has built on previous work that identified a group of cells that

are resilient to current cancer treatments and spread the cancer to other parts of the body.

“We aim to demonstrate that a therapy that combines standard care treatment with a treatment that inhibits cancer stem cells could prevent cancer recurrence,” Dr Rao says.

By looking at how these cancer stem cells are wired up at the gene level and understanding what makes them different to normal breast cells, Dr Rao and her colleagues were able to identify small molecule inhibitors that drugs can specifically target.

Dr Rao, who is part of the University’s Centre for Research in Therapeutic Solutions (CResTS) adds that “these treatments could also be used in tackling other aggressive cancers, such as prostate, ovarian and pancreatic cancer.”

Dr Rao and her colleagues received a grant of $571,894 from the (NHMRC) for

the project. They are working in close collaboration with Canberra Hospital and the Australian National University (ANU) on their research.

“We are at the verge of making a breakthrough discovery as well as developing new therapeutic strategies, so this funding will ensure that our work continues to go forward.”

University of Canberra researcher Dr Sudha Rao is working at the lab on a treatment to stop the recurrence of breast cancer.

Stopping Cancer Recurrence In Its Tracks

Attracting and retaining an appropriately skilled health workforce remains a challenge for most rural and remote areas of Australia. Current evidence suggests that workforce shortage in these settings will increase even more over the next decade, with adverse health outcomes for local populations.

Models of care which rely on increasing specialisation and rigid professional barriers are increasingly unaffordable and detrimental to a patient-centred approach focussed around prevention and primary care. The solutions to these issues lie in a digitally enabled health system, engaged patients and strengthening of regional and local networks of key stakeholders. With increased pressure on the health budget, it is time for longitudinal research and investment in local and sustained innovative solutions, rather than piecemeal initiatives subject to the vagaries of three year electoral cycles.

The University of Newcastle has a long tradition of recognising challenges and working towards solutions. As an on-going commitment to rural communities, the University of Newcastle Department of Rural Health (UoNDRH) is leading a bid for a Cooperative Research Centre (CRC) focussed on Healthcare Access for Rural Communities (HcARC), to be submitted in June 2015 (CRC 18th selection round).

A CRC is a collaboration of industry, research, government and community organisations that are working together to address a major challenge and deliver significant economic, environmental and social benefits to Australia. A CRC undertakes two to three research programs, each including a number of research activities, to achieve the overall outcomes of the CRC.

The HcARC-CRC proposes to focus on innovation and research into the outcomes from a digitally enabled rural health system, and models of care and health workforce teams that meet the needs of rural communities.

The key to the success of CRCs has been the long-term collaboration between research partners and end-users that drive the program. For the HcARC CRC end-users include healthcare providers/organisations and industry partners who choose to base themselves and deliver their services in rural areas, as well as rural communities themselves. They are the people and the communities who will benefit from CRC outcomes.

The University of Newcastle invites researchers, educators, primary health care providers, public and private hospitals, consumer groups and technological entrepreneurs to collaborate in the CRC, with the aim of providing workable, well researched and affordable responses to the challenge of providing access to safe and quality health care for rural communities.

Please join us at a national workshop to be held in Tamworth on Thursday 5th June 2014, facilitated by Ms Jenny Mason. Jenny is the former Director General of the NSW Departments of Health Services & Community Services and the Chair of the ‘Review of Australian Government Health Workforce Programs’ (2013). The

workshop aims to bring together industry partners and other end-users, and academics with expertise and/or interest relevant to the HcARC CRC Program. These participants will refine the research programs and give commitment to the HcARC-CRC.

The workshop will be held in the new Tamworth Education Centre, which together with the refurbished existing University Department of Rural Health facilities, was officially opened on May 9th, 2014. This was the culmination of five years of planning and significant support from the Commonwealth government, the University and Health Workforce Australia. The Centre provides quality infrastructure to support the attainment of excellence in professional education for allied health, nursing and medical students and further the rural health agenda. The HcARC-CRC is an exciting initiative to launch and celebrate these new facilities in rural NSW, and we look forward to engaging with a range of national partners to scope and develop the CRC bid.

Further information will be provided as the bid develops. If you are seeking further information on the HcARC – CRC, please contact: Professor Nicky Hudson, Director UoNDRH on 0400 493 066 or Jennifer Lang, Executive Officer UoNDRH on 0409 394 713

Tamworth Education Centre

.


Winter 2014Enhancing Healthcare Access for Rural Communities in Australia: Time for local and sustained solutions

Dr Erin Conway, Australian Catholic University.

The Hazel Hawke Alzheimer’s Research and Care Fund was established in 2004 to support dementia care research in Australia. Supported by philanthropic donations alone, the fund annually awards the Hazel Hawke Research Grant in Dementia Care to an early career researcher working on a project to improve the care of people with dementia.

Past recipients have focused on areas such as music therapy, nutrition, dental care, quality care for end of life, Alzheimer’s disease and Down syndrome, educational resources for indigenous communities, treating anxiety and depression in carers, and intervention for people with a rare form of dementia called progressive aphasia (which affects language abilities).

“Our team could not have begun our work without the Hazel Hawke Research Grant in Dementia Care” said Dr Karen Croot, Lecturer in Applied Cognitive Psychology and recipient of the 2010 award.

“We have been able to provide professional development for speech pathologists, neurologists and geriatricians working with people with primary progressive aphasia. This project has opened doors to new collaborations and has generated spin-off research projects for graduate students. We hope to continue this work to extend the evidence base for speech pathology services to improve communication and quality of life for people with primary progressive aphasia.”

Continued public philanthropy since 2005, has ensured a range of research projects have been funded annually. Dr Erin Conway was the 2012 recipient of the award.

A speech pathologist, researcher and lecturer based at the Australian Catholic University’s School of Allied Health. Dr Conway is investigating how to treat difficulties in naming objects, or retrieving an appropriate word from memory in everyday conversation. This is a prominent feature of the progressive language difficulties that occur for people with dementia, which impact on social interactions and quality of life.

Family and clinical experiences with dementia led to Erin developing a passion to work in a field where she could improve the quality of life of people living with dementia.

“There is positive evidence that people with dementia can re-learn lost words, however, previous research has had little success in encouraging the use of the re-learned words in everyday conversation” Dr Conway said.

“My study aims to provide evidence to promote speech pathology intervention for individuals with language difficulties associated with dementia.”

“With an increasing number of people living with dementia, the Hazel Hawke Research and Care Fund’s commitment to improving the quality of care provided to those people and their families is incredibly important. Through their support for ‘care’ based research the Hazel Hawke fund has provided me with an opportunity that I may not otherwise have had, to advance my research and hopefully contribute to improving the quality of care for people living with dementia.”

Administered by Alzheimer’s Australia Dementia Research Foundation, the Hazel Hawke Alzheimer’s Research and Care Fund welcomes donations and philanthropic support to increase Australia’s dementia research capacity. www.dementiaresearchfoundation.org.au

“There is positive evidence that people with dementia

can re-learn lost words, however, previous research

has had little success in encouraging the use of the re-learned words in everyday conversation”


Winter 2014

Hazel Hawke’s Dementia Care Legacy

http://dementiaresearchfoundation.org.au/

Editor’s Corner

Who can put an article in grassROOTS?grassROOTS is for and by members of Research Australia and is designed to showcase the activity in philanthropy for health and medical research, through either fund raising activity, awards, or the results of actual research funded by philanthropy. It is also a vehicle for the broader community to understand the importance of philanthropic funding and how they can contribute to the expansion and improvement in health and medical research in Australia.

When will I need to get my article in by if I want to be featured in the next edition?The article submission deadline is July 22, 2014. Articles should be no more than 1000 words long and please provide one or more photos (with subtitles) and logo to accompany the article.

Please submit articles via email to: [email protected]

Research Australia does not warrant or guarantee the accuracy, quality, completeness, currency, or validity of any information on its website or newsletter. Some of the materials in classified ads, press releases, and newsletters are also provided by other organisations. Research Australia does not edit or control the financial information it receives. Due to the possibility of human and mechanical error, neither Research Australia nor any of the contributors to this newsletter are responsible for any errors or omissions. All information is provided “as is” without warranty of any kind. Neither Research Australia nor the contributors to this newsletter make any representations as to the accuracy or integrity of the information. They disclaim all express, implied, and statutory warranties of any kind, including warranties as to accuracy, timeliness, completeness, merchantability, or fitness for any particular purpose. Neither Research Australia nor its contributors will be liable for any damages of any kind incurred as a result of the information contained within this newsletter or on this site.


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