RSS Feeds€2 million funding to increase charity led research into rare diseases
- Release Date:
- Monday 02 April 2007
- Summary:
Mary Harney, Minister for Health and Children, will today announce 33 novel research projects to improve patient health which will be funded through a new joint funding scheme co-ordinated by the Medical Research Charities Group (MRCG) and the Health Research Board (HRB).
- Full Story:
Mary Harney, Minister for Health and Children, will today announce 33 novel research projects to improve patient health which will be funded through a new joint funding scheme co-ordinated by the Medical Research Charities Group (MRCG) and the Health Research Board (HRB). A total of €2 million will be invested each year, for three years, to support research into both common and rare diseases including cancer, retinitis pigmentosa (a form of blindness), epidermolysis bullosa (a rare skin disease), muscular dystrophy and cystic fibrosis.
‘MRCG members are typically small charities and have limited budgets for funding research. This initiative where the Government match the MRCG members’ annual investment of €1 million means that we can support a substantial increase in the number of research projects’, said John McCormack, Chairman of the MRCG. ‘The HRB input has helped to bring greater consistency of standards from the design of application forms to peer review and the development of research contracts. The members have found the HRB’s research management expertise invaluable in terms of ensuring we are working to the best international practice’.
Speaking at the official announcement of the grant recipients, Mary Harney TD, Minister for Health and Children, said;
‘This new funding initiative brings together the commitment and priorities of the charities to support patient-focussed medical research and the expertise of the HRB to ensure that the research is funded on the basis of excellence, peer review and relevance. This joint approach to research funding reflects the recommendations of the government’s Strategy for Science, Technology and Innovation and I am glad to see that the research will have an impact in areas where there is clearly a great need.’
John McCormack, Chairman of MRCG said;
‘The MRCG / HRB joint funding scheme, 2006 has been a real success. Our members’ commitment to medical research over the years has been given a real boost with this funding and we look forward to further investment in this area in the future. Supporting research allows us to have an even greater impact on the lives of patients in Ireland and internationally.’
Teresa Maguire, Head of Research Management at the HRB said;
‘The HRB has a national and international reputation for managing competitive peer review processes in health research. A major role for us in this initiative is to help the MRCG members to develop guidelines around application processes, put in place a peer review process and the draft contracts and guidelines for ongoing monitoring and evaluation. We are delighted to see so many successful and high-quality projects emerge from this first call’.
Some examples of the research that will be funded are described below.
Fighting Blindness
Blindness is a devastating affliction where the ability to see is vastly diminished or even non-existent. Retinitis Pigmentosa (RP) is one cause of blindness and the name given to a group of hereditary eye disorders. These disorders affect the retina, the light-sensitive tissue lining the back of the eye, where the first stages of sight take place. In RP, loss of sight is gradual, but progressive.
As a result of funding from Fighting Blindness a group of scientific research geneticists from Trinity College were the first in the world to discover the defects in the genes that cause RP. The funding provided by the MRCG / HRB scheme will help progress this work by supporting researchers hoping to develop a safe and effective system for introducing corrective genetic material to the appropriate cells of the eye in order to restore sight. More than that, it may provide a basis for new treatments of other devastating diseases such as cancer, multiple sclerosis, Parkinson’s or other diseases where genetic malfunction plays an apparent role.
Brain Tumours
Each year in Ireland almost 300 people develop brain tumours. This type of cancer is very difficult to treat as the tumours are resistant to most drugs and to radiotherapy. Dr Verena Murphy in Dublin City University has been funded through the Irish Cancer Society to look at a new series of drugs called Tyrosine kinase inhibitors to treat brain tumours. In her preclinical work, she hopes to assess the effectiveness of these drugs and if possible to individualise treatment based on the molecular profile of each particular patient’s tumour. This is called tailored medicine, which is currently the ‘holy grail’ of all medicine.
Cystic Fibrosis
Cystic Fibrosis (CF) is an inherited disease that impairs a person’s heart and lungs. The severity of CF can vary between patients even though they have the same CF genotype. In order to help understand why this happens a new research project is now underway to collect clinical and genetic information from over 400 CF patients in Dublin and Belfast with funding from the Cystic Fibrosis Association of Ireland. Additional clinical information about lung function, nutritional status and exposure to infection will also be collected. Then, working in collaboration with researchers from the University of Washington, Seattle, the research group will carry out large scale genetic association studies in over 700 CF patients to identify novel genes that actually influence lung function. The aim is to identify why some patients get more severe CF lung disease than others. The results may also lead to new targets for future CF therapies.
Treating cystinosis
Cystinosis is a rare inherited disease which is a result of an amino acid called cystine accumulating in the cells, causing damage to organs such as the kidney, eye, muscle, pancreas and brain. If left untreated it is fatal because sufferers will die of kidney failure before they are 20 years-of-age. The existing treatment for cystinosis is called cysteamine has unpleasant and serious side effects for patients. The ultimate goal of the new research funded by the Cystinosis Foundation is to produce an odourless, tasteless and orally active treatment that only has to be taken twice a day.
Notes for editors
The Health Research Board (HRB) is the lead agency in Ireland supporting and funding health research. The HRB currently has commitments of €100 million throughout hospitals, universities and charities on the island of Ireland. Our aim is to improve people’s health, build health research capacity and make a significant contribution to Ireland’s knowledge economy.
The Medical Research Charities Group (MRCG) was formed in 1998 to inform and support charities in Ireland in the development of their medical research through one unified voice. The MRCG represent the interests of patients and its members on relevant statutory committees, and on national and international forums.
As an alliance promoting medical research, the MRCG believes that medical research charities have many common goals and can, by working together more effectively, achieve a united purpose. Through this alliance we aim to raise the profile of medical research, increase funding, and ultimately alleviate suffering from mortality caused by illness.
Members of the MRCG
Adelaide Hospital Society / Alpha One Foundation / Alzheimer Society of Ireland / Arthritis Ireland / ASH Ireland / Asthma Society of Ireland / Brainwave: The Irish Epilepsy Association / Children’s Leukaemia Research Project / Children’s Medical & Research Foundation (Crumlin Hospital) / Cork Cancer Research Centre / Cystinosis Foundation Ireland / DEBRA Ireland / Diabetes Federation of Ireland / Fighting Blindness / Heart Children Ireland / Irish Chronic Pain Association / Irish Heart Foundation / Meningitis Research Foundation / Muscular Dystrophy Ireland / Parkinson’s Association of Ireland / Research & Education Foundation (Sligo General Hospital) / Research Institute for a Tobacco Free Society / The Cystic Fibrosis Association of Ireland / The Irish Cancer Society / The Mater Foundation (The Mater Hospital).
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