1. Meningitis Research
Foundation’s current and
upcoming work
Linda Glennie
Head of Research and Medical Information

2. Impact of meningitis: aftercare
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

3. Need for information
• “ 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.”

4. ...

5. 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.

8. Neomen study
Numbers of cases Guideline
Health Care Delivery
UK & Ireland development
Eng & Wales
>360 babies ~70 babies so far
• Babies <3 months old, with
meningitis since 1st July 2010
• Ending June 2013

10. MRF Meningococcal Genome Library
Health Protection Agency, The Wellcome Trust Sanger University of Oxford
Manchester Institute, Cambridge
• 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

11. 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

12. Accessing the Library
www.meningitis.org/research/genome

14. 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.
Death records Health Protection
HPA Lab-confirmed Agency – Dr
Shamez Ladhani
Co-funded with
NHS Hospital episode Meningitis UK
hospital labs statistics

15. Current research
• 17 research projects
• Total value £2,775,907
• over £16.5 million since 1989
• 3 Africa, 1 USA, 13 UK

16. 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