Dataset

Central Registry of Rare Diseases

The Central Registry of Rare Diseases (CRRD) is a national database containing a minimal, pseudonymised, cross-sectional dataset on patients who have consulted an expert centre in Belgium for a rare disease. The registry includes patients with a confirmed rare disease diagnosis, as well as patients for whom all reasonable diagnostic efforts by rare disease experts, using state-of-the-art methods and available diagnostic capabilities, did not result in a conclusive diagnosis of a clinically recognised condition. In Europe, a disease is considered rare when its prevalence is below 5 cases per 10,000 inhabitants, and to date more than 6,500 different rare diseases have been identified. Data in the CRRD are provided by the eight accredited genetic centres and the eight Rare Diseases Functions. The registry supports national public health monitoring, policy development, and scientific research in the field of rare diseases.

Overview

Alternative Titles / Acronym
  • CRRD
Keywords
Rare diseases Epidemiology Orphanet Population-based registry Rare abdominal surgical disease Rare allergic disease Rare bone disease Rare cardiac disease Rare circulatory system disease Rare developmental defect during embryogenesis Rare disorder due to toxic effects Rare disorder potentially indicated for transplant or complication after transplantation Rare disorder without a determined diagnosis after full investigation Rare endocrine disease Rare gastroenterologic disease Rare genetic disease Rare gynecologic or obstetric disease Rare hematologic disease Rare hepatic disease Rare immune disease Rare inborn errors of metabolism Rare infectious disease Rare infertility Rare maxillo-facial surgical disease Rare neoplastic disease Rare neurologic disease Rare odontologic disease Rare ophthalmic disorder Rare otorhinolaryngologic disease Rare renal disease Rare respiratory disease Rare skin disease Rare surgical cardiac disease Rare surgical thoracic disease Rare systemic or rheumatologic disease Rare teratologic disease Rare urogenital disease
Languages
ENG, FRA, NLD
Health Categories
Population-based health data registries (public health registries)
Coding Systems
  • http://www.wikidata.org/entity/Q17027854 Q17027854
  • http://www.wikidata.org/entity/Q1753883 Q1753883
  • http://www.wikidata.org/entity/Q20811580 Q20811580
  • http://www.wikidata.org/entity/Q241953 Q241953
  • http://www.wikidata.org/entity/Q24254958 Q24254958
  • http://www.wikidata.org/entity/Q45127 Q45127
Population Coverage
The target population of the CRRD comprises individuals affected by a rare disease whose care pathway involves consultation with an accredited genetic centre or Rare Disease Function in Belgium.
Personal Data Categories
Gender Region Residency Age Range Country Health Record
Purposes

  • To support national public health monitoring, policy development, and scientific research in the field of rare diseases.

Provenance
  • Data in the CRRD originate from the eight accredited genetic centres and the eight Rare Diseases Functions in Belgium.
Landing Pages
Documentation

Spatial Information

Geographic Coverage
  • BE
NUTS Codes
http://data.europa.eu/nuts/code/BE

Additional Information

Dataset Types
Personal Data
Applicable Legislation
Legal Basis

  • For research involving special categories of sensitive personal data, Article 9(2)(j) of the GDPR establishes a specific legal basis for scientific, historical, or statistical research.

    Source
HDAB
Contact Points
  • Health services research - Rare diseases team (Sciensano)
    Sciensano
    Contact page
Conforms To
Structured Identifiers

Distributions & Resources

HDA request form

https://www.hda.belgium.be/en/data_request

Restricted en
Description

The CRRD collects a minimal dataset including patient demographics, diagnosis and diagnostic journey, as well as information on consultations and specialist referrals. Type of data: Pseudonymised individual-level data. Access: Data are not publicly accessible. Access to specific datasets or analyses may be granted upon request through a formal data request procedure. A data request form is available.

Publication Info
License cc-zero1.0
Standards & Languages
Languages en
Conforms To
Distribution Profile
Direct Links
Access URL https://www.hda.belgium.be/en/data_request
The CRRD Data Collection Definition

https://docs.healthdata.be/HDBP0008

Restricted en
Description

The Data Collection Definition (DCD) specifications of the CRRD is a detailed description of the content of one DCD.

Publication Info
License cc-zero1.0
Standards & Languages
Languages en
Conforms To
Sample Profile
Direct Links
Access URL https://docs.healthdata.be/HDBP0008
Rare diseases
epidemiology
Orphanet
Population-based registry
Rare abdominal surgical disease
Rare allergic disease
Rare bone disease
Rare cardiac disease