RDCat is a group of Irish-based healthcare professionals, active researchers, patients and advocacy groups working together with international partners to advance rare disease research.
RDCat believes anyone living with Rare Disease who wants to join in research and clinical trials should be able to. RDCat ensures Ireland is fully engaged in important European health projects, teaming up to collaborate with groups around the world. RDCat will find diagnoses for people living with unsolved Rare Disease, and will standardise training so the next generation of researchers are Rare Aware, and make sure that patients' voices are centred in research and policy discussions.
The project is funded by the Health Research Board (HRB) and hosted by UCD School of Medicine. Coordinated by Professor Rachel Crowley, UCD School of Medicine, RDCat will be delivered by a multidisciplinary consortium in collaboration with RCSI University of Medicine and Health Sciences, Trinity College Dublin (TCD), the 5 Irish ERN Lead hospitals and Rare Disease Ireland (RDI).
Rare Disease Research Catalyst Consortium lead Prof Crowley commented "RDCat is a great opportunity for patients living with rare disease to participate in national and international research, for trainees to learn more about rare diseases, and for researchers to increase their network and impact."
The project will increase engagement with national and international stakeholders including the European Reference Networks (ERNs) and the European Rare Disease Research Coordination and Support Action consortium (ERICA). The group will drive rare disease research activity and excellence in Ireland. RDCat members are part of the upcoming European Rare Diseases Research Alliance (ERDERA) programme. RDCat will develop research pathways for patients who have not received a diagnosis through standard healthcare. Rare disease research coordinators in each of the Irish hospitals acting as hosts for ERN sites in Ireland, will provide supports for rare disease researchers with ethical approval and data coordination to use the ERN registries. The project will also support the training of early career researchers through access to local and international fellowship programmes and other rare disease training resources. RDCat has a dedicated Patient and Public Involvement (PPI) work package, which will manage PPI activities with national and international partners to increase the influence of rare disease patients in research and policy. The consortium members will team up with the European Organisation for Rare Diseases (EURORDIS) to refine, test, and validate Patient Reported Experience Measures (PREMs) to objectively measure the experiences of people living with rare diseases with healthcare services in Ireland. The consortium will also collaborate with the European Rare Disease Research Coordination and Support Actiontion group (ERICA) to demonstrate how patient reported outcomes (PROs) can inform healthcare decision making around reimbursement of orphan medicines and advanced therapies for rare diseases.
Many members of the consortium are already involved in the Rare Disease Clinical Trial Network (RDCTN) and RAIN (All Ireland Rare Disease Research) and will collaborate with these networks to work on overlapping priorities.
Thank you to all RDCat project collaborators for contributing to the delivery of the project under the each of the following areas:
Governance
Research Pathway for Undiagnosed Patient
Data Support
Patient and Public Involvement
Rare Disease Early career research training