Rare Disease Group Application Form

Rare Disease Group Lead Contract

The process for new Rare Disease Groups is as follows:

1. An applicant completes the application form and emails it to [email protected].
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 information on the RDG for the website. Patient and RDG information pages are essential before a condition can open for recruitment, along with defined inclusion-exclusion criteria. The Clinician’s information is optional at this stage and can be added later.
6. The new condition opens for recruitment on RaDaR with generic data fields, agreed disease-specific items and an updated primary diagnosis page. Condition-specific data fields are added subject to programmer capacity.
7. All currently recruiting sites are informed of the new condition and a news article is placed on the RaDaR website.