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

Members of RDCTN and RDCat were delighted to attend the launch of the new National Rare Disease Strategy - a hugely welcome milestone in improving the lives of people living with rare diseases through enhanced diagnosis, treatment and support. We are especially encouraged by the strong focus on patient partnership and fostering research and innovation.

We were delighted to see the publication of the RDCTN affiliated IMPALA-2 Clinical Trial in the New England Journal of Medicine, led in Ireland by Prof Cormac McCarthy. This study represents a major breakthrough in the treatment of Autoimmune Pulmonary Alveolar Proteinosis (aPAP), rare and debilitating lung disease.

We are delighted to announce the addition of three new clinical trials to our network. These are now open for the recruitment of patients with progressive and idiopathic pulmonary fibrosis.

The work of RDCTN is reflected in a growing number of articles published in recent times. These include international guidelines for X-Linked Hypophophataemia, Pulmonary Alveolar Proteinosis and Birt-Hogg Dubé Syndrome. These can now be viewed on our website.

Professor Cormac McCarthy and Linda Sheehan took part in an interview on RTE’s Clare Byrne Show to share the story of Linda’s diagnosis with a rare lung condition – autoimmune pulmonary alveolar proteinosis (autoimmune PAP) and her subsequent enrolment in the IMPALA-2 clinical trial.

Prof Carla Moran and Dr Donal O’Malley discuss essential skills and practical tips for a thriving career in rare disease research in this insightful and informative interview. For many patients with rare disease, the first and biggest challenge isn’t treatment, it’s a diagnosis. This video explores the vital role research plays in finding answers.