Setting up a Rare Disease Group
UK-based nephrologists can apply to establish a Rare Disease Group (RDG) for a condition not currently recruiting to RaDaR.
Establishing a group involves bringing together relevant expertise and patient representation, defining recruitment criteria and agreeing on the information to be collected.
Before you apply
Check whether your condition is already represented by an existing Rare Disease Group.
The application should identify:
- A UK-based nephrologist who will lead the group
- A clearly defined rare condition with kidney involvement
- At least one patient representative
- Members with relevant clinical and research expertise, including representation across professions and the UK nations
- Proposed research interests, recruitment criteria and condition-specific data requirements
Your Clinical Director or Head of Department must also confirm their institution’s support for the application.
Application and approval
Submit your application
Send your completed application to the RaDaR team.
Review and approval
The RaDaR Operational Management Group and Rare Disease Committee review applications. You may be asked to provide further information before the application is submitted to the committee Chair for final approval.
Establishing the group
Following approval, the group lead signs the Lead Contract and provides recruitment criteria and information for the group’s website page.
The RaDaR team then prepares the registry for recruitment, including agreed condition-specific information. Additional data fields are developed subject to technical capacity.
Participating sites are informed when the group opens for recruitment.
Responsibilities of the group lead
The group lead is responsible for maintaining the group’s membership and website information, supporting recruitment and research and reporting its activities to the RaDaR team.
Groups are expected to meet at least annually and maintain patient representation. The Lead Contract sets out the full responsibilities.