RaDaR Registry – Background Information
- What is the Rare Disease Registry?
The national registry for rare kidney diseases (RaDaR) allows information to be collected from patients with rare diseases. This information is used by expert groups appointed by the Renal Association. These groups are called Rare Disease Groups (RDGs). They consist of clincians, scientists and patient representatives. RDGs provide dependable information on tests and treatment, research and development.
- Benefits of participating in the registry
- You and your kidney specialist have access to the expertise of the RDG.
- You will be invited to occasional local or national events with regard to your condition.
- You will be helping other people with the same condition. Your data will contribute to the body of information on which future developments depend.
- You will receive information about research projects that you might like to join
- You will be given a login that allows you to access your own clinical data online if you wish.
- How to participate in the registry
- Ask your kidney specialist/consultant.
- Carefully read the information sheets about RaDaR. You can find these here.
- Then if you would like to take part, ask your consultant to go through the consent forms with you. The consent forms can be found here. Please note that you must only sign your consent form in the presence of your consultant who witnesses your signature.
Written by the Rarerenal.org operational management board