HRB announces €1 million investment for Rare Disease Clinical Trial Network on Rare Disease Day 2022
The investment in the Rare Disease Clinical Trial Network (RD-CTN) will allow people with rare disease greater opportunities for participation in the latest research and more access to innovative new therapies that will improve outcomes and transform treatments and care.
The funding builds on the Health Research Board’s (HRB) long record of strategic investment in rare disease research (€14M in the last decade*) and positions Ireland as a world leader in rare disease research and clinical trials. It will also address in a more structured manner the need for specific and connected infrastructure to support rare disease clinical trials.
Welcoming the announcement, Minister for Health Stephen Donnelly TD, said:
“Despite the term, rare diseases are not that rare. In fact, it is estimated that up to 300,000 adults and children in Ireland are affected by them. While there are clinical trials for many diseases in Ireland, there are very few for people living with rare disease.
"I welcome this investment by the Health Research Board because it will address this. It will also improve our understanding and treatment of rare disease, making a real and much-needed difference to the lives of people and families living with rare disease by ensuring they receive the right care, in the right place, at the right time - the fundamental principles of Sláintecare.”
The RD-CTN, a HRB research network to enhance rare disease care and outcomes, will be led by Dr Rachel Crowley and Dr Cormac McCarthy at University College Dublin on behalf of a large co-applicant and collaborators team. Its objectives are to:
- Act as a collaborative hub for trials in rare diseases
- Facilitate and support the conduct of trials in rare diseases
- Increase the opportunities for rare disease patients to access high-quality clinical trials.
This will result in increased in patient engagement; more trial opportunities for rare disease patients; increased opportunity for investigator-initiated trials; significant industry investment into Irish healthcare; enhanced knowledge of rare disease through patient focused research and parallel translation scientific studies.
Commenting on the announcement, HRB Chief Executive Dr Mairéad O’Driscoll said:
“This investment will enable research that is critical to improving the lives of people living with rare disease. Key to this is EU and international collaboration, and our HRB-funded Rare Disease Clinical Trial Network is already participating in several relevant initiatives, including the European Reference Networks. These partnerships will further support and progress the research agenda in rare disease, providing access to much larger trials that could not be delivered in Ireland alone.”
The RD-CTN is the seventh HRB-funded CTN. The six other CTNs are in dementia, diabetes, infectious diseases, paediatrics, primary care and intensive care. CTNs are a key component of a wider ecosystem of HRB-funded clinical research infrastructure, working together with Clinical Research Facilities/Centres (CRF/Cs), the HRB National Clinical Trials Office (NCTO) and the HRB-Trial Methodology Research Network (HRB-TMRN) to realise our strategic ambition of an Irish healthcare system where patient access to clinical trials is a routine part of standard care.
For more information, please contact:
Martha Connolly, Communications Officer, HRB
m 085 859 0250
Notes for editors:
About the Health Research Board
The Health Research Board (HRB) is Ireland’s lead public funding agency supporting innovative health research and delivering data and evidence that improves people’s health and patient care. We are committed to putting people first, and ensuring data and evidence are used in policy and practice to overcome health challenges, advance health systems, and benefit society and the economy.
* HRB investment in rare disease research
The HRB has operated a joint funding scheme since 2006 with Health Research Charites in Ireland (HRCI), formerly known as Medical Research Charities Group (MCRG). This scheme funds internationally competitive and innovative research in areas of strategic relevance to HRCI-registered research charities. It has proven to be an important funding avenue for rare disease research, accounting for approximately €7M of the HRB spend in rare diseases in the last 10 years. The Government (via HRB) investment in this scheme is up to €1M per year, and this is matched by the charities. Separate from the joint funding scheme with the charities, the HRB also supports rare disease research through a selection of research career awards, EU research projects, events and contributions to the core work of HRCI and The Irish Platform for Patient Organisations, Science and Industry (IPPOSI).