General CRRD project information

Last updated: 2023-04-04 09:25

Project name

CRRD - Central Registry for Rare Diseases

Project abbreviation


Project code


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

  • Currently, existing epidemiological data are inadequate because rare disease patients are usually not registered in databases or registration is not done in a reliable, harmonised or reusable way. As a result, the burden of rare diseases remains invisible, complicating optimal health and social care planning. A key problem in this area is the underuse of appropriate codings for rare diseases, such as ORPHA codes. The Central Register of Rare Diseases aims to address these problems, encourage clinical research by recruiting patients for clinical trials and enable research in a wider geographical area (European/international).

The current objective of the register are:

  • epidemiological research
  • preparing general reports with epidemiological data and additional analyses to support rare disease care policies
  • facilitating the identification for possible recruitment of patients for clinical trials (e.g. specific disease, particular age group, patient consent).
  • as a precursor to a more complex long-term registry in the future, data exchange with the European rare diseases platform

Regulatory framework of this project

Consult the regulatory framework information published on the pages.