Belgian Genetic Tests Database

Last updated: 2024-05-21 12:35

Welcome to the technical documentation pages for the project "Belgian Genetic Tests database", provided by the service healthdata.be (Sciensano).

In short

The publicly accesible website of Belgian genetic tests centralises comprehensive and relevant information about genetic tests offered in Belgium for the diagnosis of diseases with a genetic basis. In addition to increasing the visibility and transparency of available genetic services, the website will also provide technical details and quality specific to each test in order to meet the needs of all stakeholders, including patients, researchers, clinicians and health authorities. Click on gentest.healthdata.be to access the website.

Project description

In accordance with European and national recommendations (the Belgian Plan for rare diseases), the Belgian genetic tests database is a new, centralised database to enable access to comprehensive information about genetic test services in Belgium.

The website provides a better visibility and transparency on the available services and cover a wide range of genetic tests. Following proposals of stakeholders such as the Centres of Human Genetics, the Belgian College of Human Genetics and the healthcare authorities (RIZIV/INAMI, FPS Public Health, BELAC), specific features are integrated to manage e.g. standardised and harmonised reporting of genetic test activities.

The database also inventorise criteria such as the RIZIV/INAMI’s financial intervention for genetic analyses and the turnaround time. The conclusion of agreements and the development of Application Programming Interfaces (APIs) between the database and the Orphanet Inserm platform will allow regular update transfers of Belgian diagnostic tests to Orphanet and regular imports of their lists of diseases, genes and cross-references to other resources (OMIM, HGNC, etc.). The aspect of quality can be assessed by recording participation to External Quality Assessment schemes (name, provider and years of participation) linked to a genetic test. Finally, the genetic test database will be an essential tool for other registries, such as the future registry of genetic test results.

This documentation is being updated regularly. We try to provide as correct, complete and clear as possible information on these pages. Nevertheless, if you see anything in the documentation that is not correct, does not match your experience or requires further clarification, please create a request (type : request for information) via our portal (https://sciensano.service-now.com/sp) or send us an e-mail via support.healthdata@sciensano.be to report this documentation issue. Please, do not forget to mention the URL or web address of the page with the documentation issue. We will then adjust the documentation as soon as possible. Thank you!