Rare Disease
Clinical Trial Network

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

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Patients

Information for patients considering a clinical trial or interested in our public & patient involvement (PPI) activities

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Clinicians & Researchers

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

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Industry

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

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

 

Lorraine McGlinchey, Ulster University

About us

We are a Health Research Board (HRB) – funded network aiming to increase activity in rare disease clinical trials in Ireland. Through collaboration with patients, researchers and industry, we support development of rare disease clinical trials, trial methodology and researcher training, while keeping the patient voice at the centre of everything we do.

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.

Stay Informed

Network Highlights

Spotlight on our Activity

25th Feb 2023
Prof Rachel Crowley was invited to deliver a talk at the Brittle Bone Society All Ireland Mini-Conference 2023.

Visit www.brittlebone.org
28th Feb 2023
RDCTN Partners Dr Suja Somanadhan (RAiN), Prof Rachel Crowley (RDCTN), Dr Avril Kennan (HRCI) and Dr Derrick Mitchell (IPPOSI) attended the Rare Disease Day 2023: North South Event held in Stormont.
10th May 2023
RDCTN Partners Dr Derrick Mitchell (IPPOSI) Prof Rachel Crowley (RDCTN co- lead) and Prof Cormac McCarthy (RDCTN co- lead) participated in the Rare Disease Ireland (RDI) roundtable discussion.
17th May 2023
RDCTN Partners Vicky McGrath (Rare Diseases Ireland) and Prof Cormac McCarthy (RDCTN co-lead) participated in the Oireachtas cross party group meeting on rare diseases.
25th May 2023
The Rare Disease Clinical Trial Network launched its first journal club aimed at building capacity in early career researchers.
14th June 2023
Dr Siobhán Hendrick was invited to present at the Rare Disease Forum delivering a talk on public and patient involvement in the Rare Disease Clinical Trial Network. The forum was hosted by RDCTN partners Health Research Charities Ireland.
16th June 2023
Dr Siobhán Hendrick partnered with Health Research Charities Ireland to deliver a workshop on researchers and charities partnering at the PPI Ignite Summer School in University of Limerick.
28th June 2023
Prof Rachel Crowley (RDCTN co-lead) joined the Get Rare Aware Campaign lead by RDCTN Partner Vicky McGrath (Rare Diseases Ireland) and at the houses of the Oireachtas asking for improved genetic services in Ireland.

Network Highlights

Spotlight on our Activity

25th Feb 2023
Prof Rachel Crowley was invited to deliver a talk at the Brittle Bone Society All Ireland Mini-Conference 2023.

Visit www.brittlebone.org
28th Feb 2023
RDCTN Partners Dr Suja Somanadhan (RAiN), Prof Rachel Crowley (RDCTN), Dr Avril Kennan (HRCI) and Dr Derrick Mitchell (IPPOSI) attended the Rare Disease Day 2023: North South Event held in Stormont.
10th May 2023
RDCTN Partners Dr Derrick Mitchell (IPPOSI) Prof Rachel Crowley (RDCTN co- lead) and Prof Cormac McCarthy (RDCTN co- lead) participated in the Rare Disease Ireland (RDI) roundtable discussion.
17th May 2023
RDCTN Partners Vicky McGrath (Rare Diseases Ireland) and Prof Cormac McCarthy (RDCTN co-lead) participated in the Oireachtas cross party group meeting on rare diseases.
14th June 2023
Dr Siobhán Hendrick was invited to present at the Rare Disease Forum delivering a talk on public and patient involvement in the Rare Disease Clinical Trial Network. The forum was hosted by RDCTN partners Health Research Charities Ireland.
16th June 2023
Dr Siobhán Hendrick partnered with Health Research Charities Ireland to deliver a workshop on researchers and charities partnering at the PPI Ignite Summer School in University of Limerick.

Network Partners

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