Rare Disease
Clinical Trial Network

Uniting Expertise, Empowering Patients:
Transforming Ireland's Rare Disease Clinical Trial Landscape

Public & Patients

Click here if you’re a patient considering a clinical trial or click here if you’re interested in our public & patient involvement (PPI) activities

Clinicians & Researchers

Information for clinicians & researchers about rare disease clinical trials, training opportunities and support available

Industry

Information for industry on our supports for setting up trials in Ireland, and navigating regulatory & approval processes

“We can work together to bring a better landscape for the families and the people that we care about”

Lorraine McGlinchey, Ulster University, Speaker at the Rare Disease Clinical Trials Conference, 2024

Why join the Rare Disease Clinical Trial Network?

International Expertise

The network is a collaboration hub that links with international expertise and advocacy groups to exchange ideas, build capacity, foster partnerships and speed up innovation in rare disease research.

Patient Led

Our public and patient involvement (PPI) activities ensure that the patient voice is at the heart of everything we do. This leads to better quality research and outcomes that meet the needs of the rare disease community.

Greater Access to Clinical Trials

Our international collaborations, PPI activities and support for industry & researchers help to increase the quantity and quality of rare disease clinical trials in Ireland.

Network Highlights

Spotlight on our Activity

Findings from the TOPaZ clinical trial, published in JAMA, have shed new light on treating Osteogenesis Imperfecta (OI) - a rare genetic condition known as ‘brittle bone disease’. Led in Ireland at St Vincent’s University Hospital and UCD CRC by Prof. Rachel Crowley (Co-Lead RDCTN) and internationally by Prof. Stuart Ralston (University of Edinburgh)

Optimising Recruitment & Retention in Clinical Trials seminar organised by UCD CRC in collaboration with RDCTN, HRB Trials Methodology Research Network, the Irish Critical Care Clinical Trial Network and Infectious Disease Clinical Trial Network.

RDCTN and UCD School of Medicine hosted the inaugural PH-ILD Forum in collaboration with Universite Paris-Saclay and Royal Brompton Hospital/Imperial College London. The meeting brought together experts from 14 countries to exchange insights on Pulmonary Hypertension and Interstitial Lung Disease.

Our new publication Inclusive Involvement: Practical Steps You Can Take Today A Friendly Guide to Equality, Diversity & Inclusion (EDI) in Public and Patient Involvement (PPI) iswritten for anyone involved in health research, including patients, members of the public, researchers, research charities, PPI leaders, funders, and healthcare professionals.

On World Rare Disease Day we were proud to join forces with St Vincent’s University Hospital, RDCat, University College Dublin (UCD) and ERN-LUNG – European Reference Network for rare respiratory diseases (ERN) to raise awareness of the importance of: Early recognition and timely referral; Access to specialist expertise; Coordinated, cross-disciplinary care pathways; Research and clinical trials; Equity in rare disease care