Central Registry of Rare Diseases

The Central Registry of Rare Diseases centralises data on all Belgian patients with a rare disease.

Introduction
Why do we need a Central Registry of Rare Diseases?
Who has commissioned the Central Registry of Rare Diseases?

Participating centres 
The eight approved genetic centres in Belgium collect data for the registry. View the contact details of these centres.

Definition of the Data Collection
On this page you can find the technical information to perform the data collection. You can also find fome useful documents for physicians and encoders to help perform the data registration.
 
Clinical studies and research
The registry supports research into rare diseases and the development of orphan drugs.​ Find out why taking part in clinical studies is important.

Privacy and permission
Read about what we do to protect your privacy here.

Patient organisations
The patient organisations have a say in the development of the registry. You can contact these associations if you have questions about the registry, or about a rare disease in general.

FAQ
Frequently asked questions and their answers.

Research results
The collected data is used to carry out epidemiological research. You can view the results of the research here.