The Rare Disease Clinical Trial Network (RDCTN) is a Health Research Board (HRB) funded clinical trial network that aims to increase the quantity and quality of clinical trials in rare diseases in Ireland, while ensuring that the patient voice is at the centre of all activities.
Rare diseases are diseases, which affect a small number of people compared to the general population (less than 1 person per 2,000). Although individually rare, it is estimated that approximately 300,000 people in Ireland are living with a rare disease, which has a big impact on population health and our health service. In the rare disease field, research needs to be collaborative on an international scale to ensure that patients, experts, researchers and clinicians are connected. Therefore the Rare Disease Clinical Trial Network aims a be a collaboration hub that links with international expertise to ensure that people living with a rare disease in Ireland have access to world-leading rare disease clinical trials, and that the patient voice is fully embedded across all activities.
Public & Patient Involvement (PPI) Contributors Needed
Share your unique perspective and lived experience of rare diseases to help improve the quality and relevance of rare disease clinical research.
What is PPI?
Public and Patient Involvement (PPI) in clinical research means conducting research with or by patients and the public rather than about, to, or for them.
What Might I Be Asked To Do?
- Work with research teams on specific projects or trials
- Join the Rare Disease Clinical Trial Network (RDCTN) network governance teams
- Collaborate on prioritisation activities or funding applications or strategy development
- Co-create educational materials and or workshops
- Join our patient advisory group
Join the RDCTN Network (UCD Mailing List)
To express your interest contact cassandra.dinius@ucd.ie
For more information follow the RDCTN on X (Twitter) @rare_trials
Website: rarediseaseresearch.ie
