Meningitis Research Foundation' current and upcoming work by Linda Glennie

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Transcript of Meningitis Research Foundation' current and upcoming work by Linda Glennie

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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