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The Key Role of Charities in Supporting Brain Research

This survey explores the support provided by NAI member organizations for research into neurological conditions, examining their goals, barriers, funding, partnerships, and types of research funded.

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The Key Role of Charities in Supporting Brain Research

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  1. The key role of charities in supporting brain researchPeter Murphy, Deputy CEO, Epilepsy Ireland

  2. NAI Survey • Aim: to explore the support provided by NAI member organisations for research into neurological conditions • Online questionnaire, January 2015 • 14 charities

  3. Infrastructure Does your organisation's strategic plan outline specific targets or goals in relation to research?

  4. Infrastructure Does your organisation have a formal research strategy?

  5. Infrastructure Research Committee? Staff with research responsibilities?

  6. Barriers What are the main barriers for your organisation in actively supporting research into neurological conditions?

  7. Partnerships Does your organisation have an ongoing relationship with an academic or research institution(s) carrying out scientific research into neurological conditions?

  8. Partnerships

  9. Funding • Average amount invested p.a. : €50,000 • Typically <5% of the annual budget • 5 – 10%: One organisation • >30%: Two organisations

  10. Funding Funding now versus five years ago

  11. Type of research funded • Basic science/ Genetics 3 • Psychosocial research 2 • Epidemiological research 2 • Health Services 2 • Treatments, therapies, devices or technologies 3 • Evaluation of organisation’s programmes/services 2by external researchers with a view to publication

  12. Summary • Strong (and growing) support for research from NAI members • Financial & Non-financial supports • Organisations becoming more strategic and professional in approach to research • Diversity in the research supported • Significant barriers DO exist

  13. Implications for researchers • Goodwill • Charities open to partnerships • Benefits to working with charities: • Viable alternative for securing funding • Access to PWNC • Dissemination and education channels • PPI • Charities also need support from wider research community • Responsibilities

  14. Implications for charities • How NB is research to your organisation & stakeholders? • How high are YOUR barriers? • What do you want to achieve? • How can you get there? • Other charities experiences

  15. Epilepsy Ireland & Research: "To undertake, encourage and assist research into the causes of, cure for and management of epilepsy and into the social and psychological effects of the condition".

  16. Strategic Approach: • Annual research priorities • Annual budget allocation for research • Formal application process • Co-ordination with the MRCG/ HRB Joint Funding Scheme • Peer review system • Research Advisory Committee • Contracting, Monitoring & Evaluation • Sustainability • Research Communications

  17. Research Priorities

  18. The Process

  19. Research Review Board

  20. Epilepsy Ireland Research Funding Scheme: • Launched in 2009 • 8 projects funded since 2010 • From 38 applications (21% funded) • 17 deemed ‘fundable’ (47% funded) • Investment of €780,000 to date • From €4.4m applied (18% funded) • Approx €110,000 p.a. (7% of budget) • 1-3 year projects up to 50k p.a. • 6 projects on 50/50 basis via the Joint Funding Scheme

  21. Projects Investment – Research Type

  22. A pharmacogenomic study of chronic refractory epilepsy Dr.GianpieroCavalleri - RCSI Dates: 2010-2012 (completed)Funding: €148,000 (with HRB) Aims: • Identify genetic factors predicting chronic, drug resistant epilepsy as well as response to particular classes of AEDs. • Identify the pathophysiology of epilepsy • Investigate new therapeutic avenues (personalised treatment)

  23. A pharmacogenomic study of chronic refractory epilepsy Dr.GianpieroCavalleri - RCSI Outcomes: • 400 patients recruited and genetically profiled • Enabled participation in large international collaboration • No clear predictors of refractory epilepsy identified • Identified gene involved in CBZ-induced Stevens-Johnson syndrome • Confirmed SCN1A gene as a risk factor for TLE • Identified genetic predictors re the volume of the hippocampus • Identified role of TDP2 gene mutations in PWE&ID

  24. A pharmacogenomic study of chronic refractory epilepsy Dr.GianpieroCavalleri - RCSI Outcomes: • 7 peer-reviewed publications including NEJM, Nature Genetics, Lancet • 3 conference presentations • Further funding • SFI €624,000career development award • EU FP7 funding – co-applicant in €6m award • US funding – Co-applicant in €25m award

  25. Genome-wide DNA methylation analysis of hippocampus from patients with pharmacoresistantTLE Prof David Henshall, RCSI Dates: 2012- 2013 (completed) Funding: €75,000 (with HRB) Aims: • To study a novel mechanism regulating how genes are turned on or off; DNA methylation. • To develop a DNA methylation "map" of epilepsy to identify why certain proteins/ enzymes are made or not made.

  26. Genome-wide DNA methylation analysis of hippocampus from patients with pharmacoresistantTLE Prof David Henshall, RCSI Outcomes: • 146 protein-coding genes exhibited altered DNA methylation in TLE with 81.5% of the promoters of these genes undergoing hypermethylation • Unique methylation changes found in the brain of patients with TLE • identified methylation changes to “non-coding RNA” including MicroRNA • “The first genome-wide analysis of DNA methylation changes in human epilepsy”

  27. Genome-wide DNA methylation analysis of hippocampus from patients with pharmacoresistantTLE Prof David Henshall, RCSI Outcomes: • Further funding • SFI €1million grant 2014 • SFI PI €0.9million grant 2014 • EU FP7 funding – €11.5m funding to continue Micro RNA research (EpiMiRNA project) • Numerous publications (inc Nature, J Neuroscience) book chapters, national/ international presentations (inc ECE 2012) • Mainstream Media coverage (RTE TV, RTE Radio, Newstalk) • Published in Brainthis month

  28. Baroreflex sensitivity in individuals with epilepsy, does it play a role in SUDEP? Dr. Yvonne Langan, St James’s Dates: 2010-2012 (completed)Funding: €80,000 Aims: • To better understand the autonomic processes involved in SUDEP • To examine the autonomic function of the heart in PWE compared to individuals without epilepsy • Specific focus on Heart Rate Variability and Baroreflex sensitivity (maintaining normal blood pressure)

  29. Baroreflex sensitivity in individuals with epilepsy, does it play a role in SUDEP? Dr. Yvonne Langan, St James’s Outcomes: • 84 patients recruited (42 PWE v 42 controls) • HRV and Baroreflex sensitivity reduced in PWE • Seizure activity may impact on ANS structures in brain • Confirmed previous smaller scale work on HRV • First study to implicate BS in SUDEP • Poor awareness of SUDEP among participants • Winner, INA Kirker Prize 2013

  30. An evaluation of the role of the Epilepsy Specialist Nurse and the impact on patient quality of life. Prof Agnes Higgins, TCD Dates: 2013-2015 (ongoing) Funding: €150,000 (with HRB) Aims: • To establish if there are QoL differences between patients who have access to an ESN and those who don't • To assess the position of ESNs in Ireland and their impact on the patients' quality of life. • To determine whether or not the ESN is cost-effective to the public.

  31. Demystify the veil of secrecy: a mixed method inquiry of parent-child dialogue about epilepsy and its stigma Dr Veronica Lambert, DCU Dates: 2013-2015 (ongoing) Funding: €93,000 (with HRB) Aims: • To assess the relationship between parents’ perceptions of epilepsy and perceived stigma to family communication patterns, parenting styles, children’s seizure severity & children’s own perceptions of epilepsy. • To explore dialogue practices about epilepsy and epilepsy associated stigma within families from both parent and child perspective • To lay foundations for a family based communication intervention.

  32. The collaborative development of an evidence-based educational resource for self-disclosure strategies for PWE Dr Naomi Elliott, TCD Dates: 2014-2016 (ongoing) Funding: €149,000 (with HRB) Aims: • To understand the psychosocial aspects of how adult PWE self-disclose information about their condition to others • To develop an educational resource that will enable PWE to develop a repertoire of strategies for disclosure as part of everyday life.

  33. Epilepsy Deaths Register:

  34. Research Communications: • Disseminating outcomes of funded & non-funded research • Videos • Newsletters • Online • Social media • Conferences • Through fundraising projects

  35. Research Communications: • Utilising the media

  36. Research Communications: • Volunteer recruitment & Membership participation

  37. Research Communications: • Research Events

  38. Epilepsy Ireland Summary: • €780,000 invested in 8 projects • Value for Money (JFS) • High profile genetic discoveries and publications • Avenue to further funding • Implications for health service development and advocacy • Focus on psychosocial issues • Developing future expertise and infrastructure • Encouraging patient participation; linking to reseachers • Providing dissemination channels

  39. Peter Murphy pmurphy@epilepsy.ie www.epilepsy.ie @epilepsyireland Facebook.com/epilepsy.ie

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