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Meningitis Research Foundation' current and upcoming work by Linda GlenniePresentation Transcript
Meningitis ResearchFoundation’s current and upcoming work Linda GlennieHead of Research and Medical Information
Impact of meningitis: aftercareAccess 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 careParents needed a comprehensive debrief about the risks and range of possible after-effects before hospital discharge
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.”
Family impact of meningitis and septicaemia•Aim: To estimate the „spillover‟impact of men/sep on unpaid carers•These wider impacts should beconsidered in economic evaluationsbut rarely are -- no one knows how tomeasure them•Results should help decision-makersconsider a fuller range of potentialbenefits from new vaccines or long-term health & care strategies•Approximately 3400 MRF memberssurveyed with >50% response rate.
Neomen studyNumbers 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
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
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 Librarywww.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. Death records Health Protection HPA Lab-confirmed Agency – Dr Shamez Ladhani Co-funded with NHS Hospital episode Meningitis UK hospital labs statistics
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 Bvaccine implementation•2nd generation MenB vaccines – new ideas forimproved vaccines•Group B strep and/or neonatal meningitis•African research•Treatment; Diagnostics; Pneumococcalprevention; other basic research