Setting up a new Rare Disease Group

Rare Disease Group Application Form

Rare Disease Group Lead Contract

The process for new Rare Disease Groups (RDGs) is as follows:

1. An applicant completes the application form and emails it to radar@ukkidney.org.
2. The application is reviewed by the Operational Management Group and the Rare Disease Committee (RDC) with any queries fed back to the applicant for response.
3. The form, feedback and applicant responses are then sent to the Chair of the RDC for final approval.
4. Upon approval, the applicant (now RDG Lead) is notified that their application has been successful and is asked to sign the contract.
5. The RDG Lead is asked to provide the inclusion-exclusion criteria and information on the RDG for the website. This information must be provided before an RDG can open for recruitment.
6. The new RDG opens for recruitment on RaDaR with generic data fields, agreed disease-specific items and an updated primary diagnosis page. RDG-specific data fields are added subject to programmer capacity.
7. All currently recruiting sites are informed of the new RDG and a news article is placed on the RaDaR website.