· web viewinformation and criteria for advertising to autistica's insight group, discover...

THIS DOCUMENT IS FOR REFERENCE ONLY – ALL APPLICATIONS MUST BE SUBMITTED ONLINE

Application to recruit research participants or involve the autism community in researchInformation and criteria for advertising to Autistica's Insight Group, Discover or ASD-UK You can use this form to apply to any of the following, you may apply for more than one in the same application, more details about each is provided below:

Involve autism and autistic community members in research via Autistica's Insight Group Recruit research participants via Autistica's Discover network Recruit research participants via the Autism Spectrum Database UK (ASD-UK), which is

a partnership between Newcastle University and Autistica

You do not need to complete every section of the form – please only complete the relevant sections – when you complete the form online, the sections that are not relevant will be skipped automatically.

AutisticaAutistica is the UK’s national autism research charity. We work to ensure every autistic person has the chance of a long, happy, healthy life. Our mission is to:

Improve outcomes for autistic people of all ages through world-class research Grow autism research in the UK through innovative collaborations with other

funders, campaigning for increased state investment and developing capacity and infrastructure within the research community

Be the bridge between researchers, policymakers and people affected by autism, ensuring that services are evidence-based, and research responds to the autism community’s needs and desires

To help achieve this mission we help UK-based autism researchers to involve the autism and autistic communities in every stage of the research process and to recruit people to participate in research. Insight Group Autistica manage an Insight Group of 250 autistic adults, parents and carers of autistic people. The Insight Group work with Autistica and with autism researchers across the UK to improve the way autism research is conducted. Insight group members help ensure that:

Taking part in research is a positive experience for autistic people Assessments used in research studies are appropriate for autistic

people

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Research focuses on what matters most to autistic people Research materials are autism-appropriate Public events are autism-friendly Websites, articles and blog posts are easy to understand

Insight Group members help by attending workshops or discussion panels, monitoring research projects, giving feedback on planned research protocols.

The Insight Group is not designed to recruit people to take part in a research project, this option is available below.

Please note, if your application to our insight group is successful, you will be required to pay each member who gives you insights on your project an involvement fee in return for their expertise, this fee is fixed and has been set in accordance with the NIHR INVOLVE guidelines, detailed in the table below. Time Cost1 hour £201/2 day (3.5 hours) £75Full day £150

If you are interested in involving members of our Insight Group in your research project, please complete this application form and indicate that you wish to involve autistic people and/or their family members or supporters in your research.

If you have any questions about our Insight Group, please email Bethan Davies, [email protected]

DiscoverWe have over 11,000 members of Discover who are autistic people, professionals who work with autistic people, autism researchers and parents or family members of autistic people. Our members want to hear about and take part in the latest autism research happening across the UK. We don't know where in the country they are based, so you will not be able to target your recruitment and we cannot guarantee that there will be members that fit your criteria. Advertising via Discover is free of charge.

If you would like us to advertise a study you are running via an email to Discover, please complete this application form and indicate that you would like to recruit participants via Discover.

If your application is successful and meets our criteria for advertising via Discover, then we will notify you about the next steps needed for us to advertise your study.

ASD-UKWe partner with Newcastle University to provide the Autism Spectrum Database for the UK (ASD-UK). ASD-UK is the UK’s research register including families of children diagnosed with an autism spectrum disorder (ASD), who can be contacted about taking part in research.

Almost 5,000 families have joined (including over 2,000 families living in the North East). The ASD-UK families are broadly representative of UK families of children with ASD.

If you would like us to advertise a study you are running via ASD-UK, please complete this application and indicate that you would like to recruit participants via ASD-UK.

Your application will be reviewed by the ASD-UK research committee. This committee is run by Autistica with input from researchers from Newcastle University and parents of autistic children

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https://bmjopen.bmj.com/content/5/9/e008625

mailto:[email protected]

http://www.invo.org.uk/posttypepublication/involve-policy-on-payments-and-expenses-for-members-of-the-public-including-involve-group-members-february-2016/


from Autistica's Insight Group.

Advertising via ASD-UK is more targeted than Discover, and we can tell you in advance how many participants will broadly meet your criteria, including how many live within a given area and so this opportunity is suited to opportunities that involve participants attending in person. ASD-UK is also well suited to studies conducted online, by post or by telephone. An advantage of ASD-UK is that information can be provided about those who don't respond which can help in determining the representativeness of your final sample. Using ASD-UK has an associated cost.

Partnering with AutisticaIf you think running a research project in partnership with Autistica would better suit your proposed study, please get in touch with us on [email protected] and we can discuss this possibility.

To complete this form, you will need:

For involvement opportunities via the Insight Group Descriptive information about the opportunity being

advertised The number of people you wish to consult The Involvement fee you will be paying

For research participation opportunities via Discover Details of your study design Description of the sample(s) you wish to recruit, including inclusion/exclusion criteria and

sample size justifications The ethical review status of your project (you may apply before submitting your ethics

application, but the opportunity will only be advertised once ethical approval has been secured)

Details of any community involvement you have had in designing this study (this is not a prerequisite)

Information about the pre-registration of your study design and/or analysis plan (this is not a prerequisite)

For research participation opportunities via ASD-UK The study protocol Evidence of that your study design has been independently peer reviewed by

researchers outside of your team Information about whether your research is funded – including an award letter, if

applicable The participant’s information sheet(s), including where applicable, those aimed at adult or

children participants, parent/carer’s, teachers or any other groups who need to consent to your study

Consent form(s) Questionnaires/measures being used, if applicable and if they can be shared without

infringing copyright Anything else you would like us to send to families, e.g. email, text or expression of

interest form (this should include space for parents to provide you with their contact details)

A list of criteria for recruitment, e.g. number of participants you would like to recruit, geographical location, inclusion/exclusion criteria

Evidence that ethical approval has been granted or provide evidence this is not necessary.

A letter confirming sponsorship of the research (i.e. which organisation will take overall responsibility for conduct of the research, governance, and insurance)

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http://www.asd-uk.com/researchers/


Please contact the Discover team (0203 746 2673 | [email protected]) if you have any questions about completing this application form or if you require an accessible format of this application.

If you have not had a response within 2 weeks of submitting your application, please contact us directly.

By completing this survey, you agree to Autistica's privacy policy. The information submitted on this form will be kept confidential, if you apply to ASD-UK the documents you submit will be shared with members of the ASD-UK research committee to allow them to review the suitability of your application. *

I have read and agree to the Autistica privacy policy and understand my application will be shared with the ASD-UK research committee, if applicable

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Project description What is the title of the study you wish to advertise? *

Please list your email address: *

List the name(s) of each member of the research team (investigator group) including yourself and, where appropriate, list the institutions(s) they are affiliated with and their role on the team *

Name Institution Job description/role on the research team

1

2

3

4

5

6

7

The reason you are applying to involve or recruit people in your research What are you applying for? (tick all that apply) *

Seek community involvement or feedback via the Autistica Insight Group

Recruit participants to take part in research via the Discover network

Conduct a community consultation via the Discover network

Recruit participants to take part in research via ASD-UK

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Application to recruit participants for your research via Discover

Proposed dates for data collection: *

DD/MM/YYYY Start date* End date*

Please select the type of research ethics committee that has approved this study *

A UK university research ethics committee

An NHS ethics committee

We have not yet secured ethical approval

Other (please specify):

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Application to advertise via Discover before receiving ethical approval When applying for ethical approval for your study, please include a reference to the Discover Autism Research Network and to ASD-UK as methods of participant recruitment in your application.

You may complete your application form now and we will still review it. If your study is appropriate for advertising to Discover, we will issue you an in-principle acceptance to advertise via Discover. Once your study has secured ethical approval, please send confirmation of the approved amendment, along with your application, to [email protected] and we will update your application to reflect this and, at this stage, we will be able to advertise your study.

Suggested text to submit to your Research Ethics Committee is provided below.

I wish to submit an amendment to the following ethics application (ID: _________________) to include two additional methods for recruiting research participants. I wish to circulate advertisements to participate in our study via the Discover National Autism Research Network and/or for participants to be contacted based on the eligibility criteria of this study via the Autism Spectrum Database (ASD-UK) for a fee.

Discover National Autism Research NetworkDiscover is a national autism research network run by Autistica, the national autism research charity. Discover allows researchers to apply to Autistica to advertise opportunities for research participation to its members who have indicated their willingness to participate in research. We have applied to Discover, and If accepted, Autistica will send an advertisement about our study to the members of the network on our behalf. People who are interested in participating will then contact us directly to express an interest in participating in our study.

Further information on Discover

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https://www.autistica.org.uk/our-research/discover-network

mailto:[email protected]?subject=Ethics%20application%20including%20Discover%2FASD-UK


Application to advertise via Discover after receiving ethical approval Please name the ethics review board that approved this application: *

Please list the research ethics committee ID used to identify your study: *

Please indicate the following *

Yes NoDoes the research protocol approved by your ethics committee cover Discover and/or ASD-UK as a method of recruitment? Is the research protocol approved by your ethics committee GDPR compliant?

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Amending an ethical approval to advertise via Discover Given that you have not mentioned Discover as research participant recruitment methods or that your ethical approval is not GDPR compliant, we require that you submit a non-substantial/minor amendment to the Research Ethics Committee who originally approved your study.

You may complete your application form now and we will still review it. If your study is appropriate for advertising to Discover, we will issue you an in-principle acceptance to advertise via Discover. Once your study has secured updated ethical approval, please send confirmation of the approved amendment to [email protected] and we will update your application to reflect this and, at this stage, we will be able to advertise your study.

Suggested text to submit to your Research Ethics Committee is provided below.

Non-substantial amendment to include Discover as additional methods of recruiting participants

I wish to submit an amendment to the following ethics application (ID: _________________) to include two additional methods for recruiting research participants. I wish to circulate advertisements to participate in our study via the Discover National Autism Research Network and/or for participants to be contacted based on the eligibility criteria of this study via the Autism Spectrum Database (ASD-UK) for a fee.

Discover National Autism Research NetworkDiscover is a national autism research network run by Autistica, the national autism research charity. Discover allows researchers to apply to Autistica to advertise opportunities for research participation to its members who have indicated their willingness to participate in research. We have applied to Discover, and If accepted, Autistica will send an advertisement about our study to the members of the network on our behalf. People who are interested in participating will then contact us directly to express an interest in participating in our study.

Further information on Discover

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http://www.autistica.org.uk/our-research/discover-network



Application to recruit research participants via Discover continued Please select the type of community involvement engaged in for this study, select all that apply:

This study has been co-produced by researchers and community member(s)

At least one member of the research team is autistic or is a parent/family member of an autistic person

Community member(s) commented on a draft proposal

Community member(s) became involved after funding was secured

Community member(s) gave feedback on project after ethical approval was granted

Community member(s) gave feedback on wording of materials

I have an autistic mentor

This study has not had any community involvement

Additional comments (optional):

Does your study have funding or are you currently applying for funding? *

Funded research

Unfunded research

Currently applying for funding

If you are applying for funding or if your study is currently funded, please name your (proposed) funder:

Is this protocol pre-registered? *

No

Yes (please include a link to the publicly available protocol pre-registration):

We believe that research should answer questions raised by autistic people and their families. To understand what these questions are, we led a James Lind Alliance Priority Setting Partnership, with a number of partners

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including the National Autistic Society, Autism Research Trust and Autism Alliance. We asked over 1,000 people for their top questions for autism research. These were then ranked by the community and sorted into a top ten list in a final workshop attended by autistic people, parents, and professionals.

We support research that aims to address the questions highlight in this process.

Please indicate if your research addresses one of the following community priorities, or not (select all that apply) *

Which interventions improve mental health or reduce mental health problems in autistic people? How should mental health interventions be adapted for the needs of autistic people?

Which interventions are effective in the development of communication/language skills in autism?

What are the most effective ways to support/provide social care for autistic adults?

Which interventions reduce anxiety in autistic people?

Which environments/supports are most appropriate in terms of achieving the best education/ life/ social skills outcomes in autistic people?

How can parents and family members be supported/educated to care for and better understand an autistic relative?

How can autism diagnostic criteria be made more relevant for the adult population? And how do we ensure that autistic adults are appropriately diagnosed?

How can we encourage employers to apply person-centred interventions & support to help autistic people maximise their potential and performance in the workplace?

How can sensory processing in autism be better understood?

How should service delivery for autistic people be improved and adapted in order to meet their needs?

None of the above

What is the age range of participants you wish to recruit? *

Minimum age Maximum age

Age range

Please describe how you have determined your sample size. Where appropriate include your formal power analysis here. *

How many participants are needed for the study, according to the methods outlined above? *

Number

Autistic adults

Non-autistic adults

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Number

Autistic children

Non-autistic children

Parents/caregivers of autistic children and young people

Parents/caregivers of non-autistic children and young people

Parents/caregivers of autistic adults

Parents/caregivers of non-autistic adults

Autism researchers

Professionals who work with autistic people

Other, please describe:

Please outline your study inclusion criteria below (this is for internal use only and will not be included in any advert) *

Please outline your study exclusion criteria below (this is for internal use only and will not be included in any advert) *

Please select which of the following best describes the methods required for your study *

Completed entirely online or by phone

Can be conducted in-person, online, by phone or instant messenger

Must be completed in-person (e.g. clinical trial, experimental study, interview)


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How will participants be thanked for their time and expertise (Select all that apply)?

Thank you card from research team

Timely updates about the research findings

Voucher

Cash

Share feedback with families about research data collected (if this is consistent with your ethical approval)


By submitting this form, I agree all of to the following (see INVOLVE guidelines on plain text summaries) *

I will send a recruitment update to [email protected] 3 months after the study start date

I will send a lay summary of my findings when the study is completed that meets INVOLVE guidelines (see link above) within 3 months of the study end date

I will send a notification to [email protected] if the resultant study is accepted to be published

I will acknowledge Discover/ASD-UK in any resulting publications

We ask that in return for having your study advertised via the Discover autism research network and/or ASD-UK that you promote these networks to your community. Please indicate any methods you will use to advertise these networks (select all that apply)

I will advertise Discover/ASD-UK to participants in my lab/clinic by including flyers with questionnaires or newsletters I send to them

I will mention Discover/ASD-UK in an email or post newsletter I distribute

I will mention Discover/ASD-UK in a lecture or talk I give

I will share a link to Discover/ASD-UK on a social media account I use professionally

I will share a link to Discover/ASD-UK on a website for my lab/clinic


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Application to involve members of the Insight Group in your research This section of the form is to apply to involve members of the Autistica Insight Group in your research.

Involvement means that you are planning to involve Insight Group members in conducting your research, that could be, for example, in jointly coming up with a research question, as consultants who advice on the acceptability and accessibility of your study, as co-applicants on a funding application or on a steering committee.

If you are interested in recruiting research participants please go back and change your selection on this form.

Provide a brief explanation of the significance of the study and why it is important to autistic people’s lives.

You may wish to consider: Why is this question important to autistic people? What is new about this study? What is the wider

context? What positive outcome are you trying to achieve?

Please remember this will be going out to people who don’t have any scientific background, so keep the language informal.

Please provide a brief description of your study (up to 100 words). *

Are you planning on writing up or publishing any of the data you collect as part of this involvement activity? *

No

Yes (please provide details of the ethical approval you have received to cover this activity, include the name of the ethics board and the approval ID number, where applicable):

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Link to send people to – either an email address or a website so that people can find out more. This may not be used but is useful to have if recruiting a large amount of people *

If we are unable to recruit enough people from our Insight Group, would you be happy for us to go out to the wider Discover Network? *

Yes

No


Type of involvement activity needed *

Workshops

Focus Groups

Co-production

Advice on research design or materials

Surveys/questionnaires

Mentoring researchers

Monitoring research projects

Advice on communications

Media

Events

Policy

Other and/or comments:

Is the activity to be completed in-person or remotely

In person

Remotely

Either

There is more than one activity involved (please describe)

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If you are looking for insight from a specific group or groups of people (e.g. autistic women, parents of young autistic people) please list these each of groups details here. We can search by age, gender, location, sexuality, employment, co-occurring conditions, ethnicity as well as interests and more general information. *

Group Number or people Any other details about this group

1

2

3

4

When calculating the involvement fee to offer, first think about how long it may take someone to complete the task. Bear in mind that people work at different speeds, and where budget allows, it is good practice to aim to be generous. Therefore, aim to pay people at the upper limit of the predicted time taken.

The following are to be used as guidance: Full day (9.00- 17.00) £150Half day £75One hour £20

Involvement fee offered per participant *

Approximate time that will be spent:

*

Involvement fee offered per participant:

*

Please specify any key dates that the Insight Group members should know about, such as meeting dates. If asking for something to be done remotely, it is good to give a period of about 1-2 weeks depending on the amount to be reviewed. It is also worth factoring in some spare time between the end and your actual deadline, to sort any potential drop out or delays. If multiple events, please clarify if you need people to be able to attend all the events or if participants can change between events.

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Any supporting or further information

Any files to support your application

File:

Choose File After working with the Insight Group, would you be interested in using Autistica as a tool for recruiting for your study? This includes recruiting through our social media or our Discover Network

Yes

No

Maybe

Comments:

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Community consultation via Discover Name of Project *

Name and email address of lead contact *

Name *

Email *

Name(s) of companies and people involved

1

2

3

4

5

6

Have you involved or consulted autistic people in the creation of your project and information collecting tools?

No

Yes (please specify):

Provide a brief (up to 150 words) explanation of the significance of the study and why it is important to autistic people’s lives. You may wish to consider: Why is this question important to autistic people? What is new about this study? What is the wider context? What positive outcome are you trying to achieve Please remember this will be going out to people who don’t have any scientific background, so keep the language informal

Where do you want interested people to be sent to find out more/ take part? A website or an email address *

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Please select which of the following best describes the methods required for your study *

Completed entirely online or by phone

Can be conducted in-person, online, by phone or instant messenger

Must be completed in-person (e.g. clinical trial, experimental study, interview)


How many people are you looking to recruit? *

What demographics of participants do you want to recruit?Is there anything that will exclude people from taking part? *

Is there any further information about your study that you want to add?

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Applying to recruit participants via the Autism Spectrum Database UK (ASD-UK) When you apply to recruit research participants via ASD-UK your application will be reviewed by the ASD-UK research committee. This committee is chaired by Autistica and is composed of parent representatives, researchers, clinical academics from Newcastle University and the ASD-UK database administrator. After you submit your application a member of the team will be in touch to let you know the date your application will be reviewed and you will be invited to answer the committee's questions by phone on the day it is reviewed.

Which of these descriptions best describe your project? *

Run by an academic institution(s)

Run by a commercial institution(s)

A collaboration between academic and commercial institutions

Comments:

Please state if you have conducted any pilot testing, if you have, please provide details below

Please include a brief (approx 150) word summary of your project and provide details of the stage you are currently at (e.g., have you already collected some data and, if so, please provide some details of this). *

Have not started data collection yet

Currently recruiting (please give details of the data already collected)):

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Please provide details about why are approaching ASD-UK (e.g., how many participants you aim to recruit, what types of samples you are hoping to access, why ASD-UK is well suited to these goals). *

What will participants receive in return for their participation? *

Participants will be sent a thank you letter and a summary of the research findings

ASD-UK will be sent an update when recruitment closes for this study

ASD-UK will be sent a summary of the findings to circulate with its members

Participants will be sent a report about their research data for personal use or use by professionals working with them (if applicable and consistent with your ethical approval)

Travel expenses will be covered within a reasonable distance

Participants will be re-reimbursed for their time with cash or shopping vouchers


Comments:

Please upload the following documents to support your application.

Please save each document with the filename in the square brackets listed below before uploading them.

The following file formats are acceptable (.doc, .docx, .pdf, .txt, .ppt, .pptx)

A study protocol [PROTOCOL] *

File:

Choose File Comments:

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Evidence that this study has ethical approval from your institutional research ethics committee [ETHICAL APPROVAL] *

File:


Evidence of funding or studentship supporting this research, if applicable [FUNDING] *

File:


A letter confirming sponsorship of the research (i.e. which organisation will take overall responsibility for conduct of the research, governance, and insurance) [SPONSORSHIP] *

File:


The participant’s information sheet(s) for children/young people (if applicable) [CHILD INFORMATION SHEETS]

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File:


The parent/carer information sheets. [PARENT INFO SHEETS] *

File:


Consent form(s) [CONSENT FORMS] *

File:


Evidence of peer review [PEER REVIEW] *

File:


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Questionnaires to be used (if applicable and does not infringe on copyright to share) [QUESTIONNAIRES]

File:

Choose File

Comments:

Anything else you would like us to send to families, e.g. email text or expression of interest form (this should include space for parents to provide you with their contact details). [OTHER MATERIAL]

File:

Choose File

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Information to be included in an advert for your study Please use this page to submit to us the information we would need to advertise your study to Discover or ASD-UK. Please note, a request to submit this information is not an indication that your application has been accepted.

Please suggest the text to be used to advertise your study, describe your research and include the following headings: 'Who can take part?', 'What do I need to do?', 'What is involved?' (max 200 words)

Please provide a website or an email address to direct potential participants to find out more or to register their interest *

Please consider uploading an image related to this opportunity to accompany the advert for your study (file formats accepted: .png, .jpg, .jpeg)

File:

Choose File Please confirm the following details about the photograph you are submitting

If this image is a photograph that depicts any people, I confirm that I have the adequate consent and signed release forms required to use this photo for this purpose

This image is high resolution

If this image is a photograph, I confirm that I took this photo, this photo is in the public domain or that I have adequate permission to use this photo

Please include any other relevant details about your study here

END

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· web viewinformation and criteria for advertising to autistica's insight group, discover...

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