Rare Disease
Clinical Trial Network

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

Patients

Information for patients considering a clinical trial or 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

More Info >

“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

The Rare Disease Research Conference will take place on the 10th April 2025 in the O'Reilly Hall, UCD. Topics will include Rare Disease Trial Methodologies, ERN Registries and Clinical Trial Case Studies. 'Abstract call' coming soon.

Calling PPI Contributors! Bring your perspective to our Rare Disease PPI Panel! With flexible time commitments and supports available, you can make a real impact by partnering on research that truly matters. Learn more & express your interest: https://lnkd.in/gJMupB8Q

Check out the latest additions to our Toolbox - an introduction to using RStudio compiled by our Research Data and Regulatory Affairs Officer Sarah Forde and the EJP VP Portal - thanks to EJPRD for kind permission to share.

The RDCTN Journal Club returned with a bang with two excellent presentations on rare metabolic and rare eye conditions by Dr Kevin Gaughan and Dr Bridget Moran respectively. If you missed it, don't worry, the recording is now available on our website. Stay tuned for updates on the next instalment!

We are delighted that our application, in collaboration with Health Research Charities Ireland, was successful. We plan to develop a guidance document aligned with the theme Innovative approaches and methodology related to equality, diversity and inclusion in PPI in research - watch this space!

We were thrilled to showcase how RDCTN is influencing rare disease research by keeping the patient voice at the centre of everything we do at the UCD SNMHS International Conference. Thanks to our PPI Liaison Officer Dr Cassandra Dinius and PPI Panel Partner Jackie Kiernan for flying the flag for RDCTN!