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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