Brain Research in Ireland: Delivering on the Potential March 10 th 2015

1. The Key Role of Charities in Supporting Brain Research Marie Downes, MRCG Development Executive Brain Research in Ireland: Delivering on the Potential March 10th 2015 Neurological Alliance of Ireland and Irish Brain Council

2. Medical Research Charities Group (MRCG)? Umbrella group of Medical Research and Patient Support charities Represent 34 charities Represent over 1 million patients Support Patient-led Medical Research

3. Friends of the Rotunda Heart Children Ireland Inclusion Ireland Irish Cancer Society Irish Heart Foundation Irish Thoracic Society MS Ireland Muscular Dystrophy Ireland Parkinson’s Association of Ireland REF, Sligo General Hospital Royal Victoria Eye and Ear Research Hospital Rutland Centre Sightsavers International (Ireland) St John of God Research Foundation St Patrick’s Hospital Foundation St Vincent’s Anaesthesia Foundation The Mater Foundation The Saoirse Foundation MRCG Members • Alpha 1 Foundation • Alzheimer Society of Ireland • Arthritis Ireland • Asthma Society of Ireland • Breakthrough Cancer Research • Children’s Fund for Health, Temple Street Hospital • Children’s Medical and Research Foundation • COPD Support • Croí – West of Ireland Cardiac Foundation • The Cystic Fibrosis Association of Ireland • Cystinosis Foundation Ireland • Debra Ireland • Diabetes Ireland Research Alliance • Duchenne Ireland • Epilepsy Ireland • Fighting Blindness

4. Patient-led Medical Research Connects patient support groups with the research community – support PPI Essential to ensure the voice of the patient is heard through all stages of research cycle Playing a powerful role in stimulating research into projects that may not otherwise attract funding

5. MRCG/HRB Joint Funding Scheme • Since 2006 the Medical Research Charities Group (MRCG) has received statutory funding from the Dept. of Health which has operated through a Joint Funding Scheme with the Health Research Board (HRB). • €800k is allocated annually towards the cost of a successful research programme. • All Research Types permissible (e.g. basic biomedical, health services, policy etc.) • Members pay 50% of the cost of each research project bringing total annual spend to approx. €1.6 million

6. MRCG/ HRB Research Projects MRCG/HRB Joint Funding Scheme has funded 97 medical research projects since inception of scheme in 2006 88 of these were hosted in Irish institutions and 9 overseas Projects operate to best International Standards Many of these research projects have made significant internationally recognised findings

7. MRCG/ HRB Research Projects – The Process Charities issue calls in line with goals and current research strategy of their organisation Principal Investigators(PIs) submit projects to charities Evaluated by charity research panel Selected projects are reviewed by 3 international peer reviewers (reviewers selected by charity) Selected projects submitted by charity to HRB Evaluated by a joint panel of experts (selected by HRB and MRCG) Award of up €150,000 over 3 years provided by HRB MRCG charity members match money provided by HRB Total award value of up to €300,000 per project over a maximum of 3 years

8. Co-Funding between charities Co funding between two MRCG Member charities Many MRCG Member charities have common research goals Some research can be too compartmentalised when only one condition is considered. Research areas can be relevant to more than one condition or more than one charity. Co funding between MRCG member charity and international sister charity Opportunities with international sister charities to participate in international research and to leverage funds for Irish research For Rare Disease charities, sample sizes in Ireland can be too small to give meaningful results

9. Breakdown of Research Areas Funded

10. Number of Applications Vs Successful Awards

11. Joint Funding Scheme Project outcomes and impacts • 26% Projects reported Healthcare Innovations • Therapies and drugs in clinical assessment, • some new therapies adopted • practise changes • 46% Projects reported Policy and Practice influences • -research cited in clinical guidelines • informing training • 64% report Public/Patient Dissemination events • Conferences • National Media • School Talks

12. Irish Health Research Forum • MRCG undertook a study in 2014 entitled ‘The Health Research Landscape in Ireland – What Researchers Say’ • TheIrish Health Research Forum (IHRF)wasestablished to address key issues that were identified in the study and influence health research policy. • The IHRF is led by a Steering Group including representatives of government bodies, research funders, the HSE and Research Institutions. • The Forum will consider key health research issues and identify constructive solutions at twice annual Forum meetings of Health Research stakeholders.

13. Key Study Findings • There are gaps in enabling infrastructure and financial sustainability is a concern • Particular important areas of research are not prioritised • Support is focused on earliest stage of research training and on well established researchers • There is limited engagement with potential users of research findings • Systematic involvement in research of patients and other lay people is not well developed • The contribution of medical research charities is not recognised in policy documents

14. Irish Health Research Forum Topics • Public and Patient Involvement (PPI) - Nov 2014 • Process to Prioritise Research Questions – May 2015

15. Thank You Marie Downes, MRCG Development Executive Brain Research in Ireland: Delivering on the Potential March 10th 2015 Neurological Alliance of Ireland and Irish Brain Council