Work Packages
WP 1 - Governance
This work package will ensure that the activity of the project remains goal-oriented and aligned with patient needs and healthcare strategies.
WP 2 - Research Pathway for Undiagnosed Patients
Work Package 2 will develop research pathways for patients who have not received a diagnosis through standard healthcare.
OPPORTUNITIES:
- New pathways to pipelines beyond standard genetic testing.
- Support to local healthcare professionals in integrating with EU clinical and research diagnostic efforts for the benefit of rare disease patients in Ireland.
WP 3 - Data Support
Work package 3 will be engaging with national and international collaborators to map
data gaps and governance challenges across the Irish and EU research spaces.
OPPORTUNITIES:
- A focused scoping review to understand the very complex picture surrounding data
resources for rare diseases in Ireland and across Europe
- A data coordination service for rare disease researchers
WP 4 - Patient & Public Involvement
The PPI work package will increase the representation and influence of Irish rare disease patients in Ireland and across Europe.
OPPORTUNITIES:
- Teaming up with the EURORDIS-Rare Diseases Europe to research and validate Patient Reported Experience Measures (PREMs) to objectively measure the experiences of people living with rare diseases
- Collaboration with ERICA to demonstrate how patient reported outcomes (PROs) can inform healthcare decision making around reimbursement of orphan medicines s
- Establishment of the Irish Patient Advocacy Group (IPAG)
WP 5 - Early Career Research Training
Work Package 5 of the RD Catalyst award will support the training of future researchers in Ireland in the complex area
of rare disease research.
OPPORTUNITIES:
- Training on methodology, statistical design and translational workshops
- A new postgraduate module on rare disease research hosted by University College Dublin and Trinity College Dublin
- RD Catalyst Programme with funded positions for Rare Disease Researchers
Network Partners
