General CRRD project information

Project name

Central Registry for Rare Diseases

Project abbreviation

CRRD

Project code

HDBP0008

Primary organization that oversees implementation of project

• Sciensano

Partner organization participating in project

• Not available

Organization that commissioned this project

• National Institute for Health and Disability Insurance (RIZIV-INAMI)

Organization providing monetary or material support

• National Institute for Health and Disability Insurance (RIZIV-INAMI)

Brief project description

• Nowadays, existing epidemiological data are inadequate because rare disease patients are generally not registered in databases or because registration is not done in a reliable, harmonised or reusable way. Hence, the burden of rare diseases remains invisible making optimal healthcare and social care planning difficult. A key problem in this area is the underuse of appropriate rare disease coding such as ORPHA-codes. The Central Registry of Rare Diseases aims to tackle these problems, to stimulate clinical research through the recruitment of patients for clinical trials and to allow research in a larger geographical area (European/international).

The current goals of the registry are:

• epidemiological research
• the generation of general reports with epidemiological date and additional analysis to support the care policy for rare diseases
• Facilitation of identification for possible recruiting of patients for clinical trials (e.g. specific disease, certain age category, agreement of patient).
• As precursor for a more complex registry on the long term in future, data exchange with the European platform for rare diseases

Regulatory framework of this project

Consult the regulatory framework information published on the fair.healthdata.be pages.