General BCFR project information

Project name

Belgian Cystic Fibrosis Registry

Project abbreviation

BCFR

Project code

HDBP0001

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

Based on the request of the RIZIV / INAMI, Sciensano and the Belgian reference centres for cystic fibrosis were put in charge for the coordination of the Belgian Cystic fibrosis registry (BCFR). The reference centres are obliged to transfer the data of all patients in Belgium with known cystic fibrosis and who have approved the informed consent.

The goal of the BCFR registry is to register as much as possible the patients with cystic fibrosis with as purpose:

• To study the epidemiologic aspects of the disease
• To make available an evaluation tool to improve the quality of care to patients with cystic fibrosis
• To make available a database to researchers that study and treat this disease
• To give advice to the official health authorities in Belgium.
• To participate in European and international projects and registries
• To identify patient groups who could be included in specific clinical trials on the initiative of researchers or pharmaceutical companies.
• To support the procedures to market new treatments and to support the procedure of reimbursements of these treatments for the benefit of patients with cystic fibrosis by submitting reports with aggregated data to pharmaceutical companies and health authorities
• To follow up the efficacy and the safety of new treatments.

The ultimate goal of this registry is to improve the quality of life and to improve the live expectancy of patients with cystic fibrosis.

Regulatory framework of this project

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