Linda Glennie
Head of Research and Medical Information
Meningitis Research Foundation’s current and
upcoming work
Access to care limited by • parents’ difficulty navigating the
systems • level of service provision• child’s age • delayed identification of after
effects • poor understanding of the link
between meningitis and after effects in health and social care
Parents needed a comprehensive debrief about the risks and range of possible after-effects before hospital discharge
Impact of meningitis: aftercare
• “ They said, ‘he might be ok or he might have problems, but you won’t know at the moment’…which I felt wasn’t really helpful ... you have to go home and just wait and see how he turns out…”
• “I don’t know if there [is] something standard on discharge that parents are given, a booklet or something would have been so useful…I didn’t know ...what things I should be looking for.”
Need for information
...
Family impact of meningitis and septicaemia
•Aim: To estimate the ‘spillover’ impact of men/sep on unpaid carers
•These wider impacts should be considered in economic evaluations but rarely are -- no one knows how to measure them
•Results should help decision-makers consider a fuller range of potential benefits from new vaccines or long-term health & care strategies
•Approximately 3400 MRF members surveyed with >50% response rate.
Neomen study
• Babies <3 months old, with meningitis since 1st July 2010
• Ending June 2013
Numbers of casesUK & Ireland>360 babies
Health Care DeliveryEng & Wales
~70 babies so far
Guideline development
MRF Meningococcal Genome Library
• Complete genome sequence of every bacterium isolated from a patient with MD in Eng, Wales, NI for a whole year of (2010-11)
• Online, open-access, free database for researchers to use
• World first
Health Protection Agency, Manchester
The Wellcome Trust Sanger Institute, Cambridge
University of Oxford
Launch: International Pathogenic Neisseria Conference Sept 2012
Aims To create a resource for the scientific, clinical, and pharmaceutical communities in all fields of meningococcal research, including: (i) Vaccine candidate discovery and evaluation of vaccine implementation (ii) Exploration of methods for the use of whole-genome sequences in routine typing (iii) Examination of the feasibility of whole-genome use in real-time outbreak management (iv) Investigation into fundamental meningococcal biology, such as pathogenesis, and population biology
Accessing the Library www.meningitis.org/research/genome
Estimating the true burden of meningococcal disease in England
• provide a more complete picture of meningococcal disease than is currently available in any single national dataset
• national surveillance currently incomplete and provides no clinical info• precise burden vital for estimating the potential impact of any new vaccine, and
monitoring impact once introduced.
HPA Lab-confirmedDeath records
NHS hospital labs
Hospital episode statistics
Co-funded with Meningitis UK
Health Protection Agency – Dr Shamez Ladhani
Current research
• 17 research projects
• Total value £2,775,907
• over £16.5 million since 1989
• 3 Africa, 1 USA, 13 UK
Call for hot topics
•Research to enable and monitor meningococcal B vaccine implementation
•2nd generation MenB vaccines – new ideas for improved vaccines
•Group B strep and/or neonatal meningitis
•African research
•Treatment; Diagnostics; Pneumococcal prevention; other basic research
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