BIRD registry, a national clinical database for inflammatory bowel disease

Description

The Belgian IBD Research and Development (BIRD; www.birdgroup.be) is a non-profit organization representing all IBD healthcare professionals from academic and non-academic centres across Belgium. BIRD is dedicated to advance education and research in the field of inflammatory bowel diseases (IBD) in order to enhance the quality of care for patients with IBD. To date, BIRD has conducted several multicentre retrospective studies, each involving separate case report forms (CRF), typically on paper. For each new study, data must be manually extracted from electronic patient records in the centres. Additionally, Belgium currently lacks reliable epidemiological data on IBD, and there is no registry tracking the use of advanced medications used for the treatment of ulcerative colitis and Crohn’s disease. To address these gaps, BIRD, in collaboration with its affiliated hospitals, is gradually building a national digital IBD clinical database, known as the ‘BIRD Registry’ (https://www.birdgroup.be/en/bird-registry), using the UR-CARE platform (provided and developed by IBDIM, the research unit of the European Crohn´s and Colitis Organisation – ECCO; https://www.ecco-ibd.eu/science/ur-care.html). This platform enables the collection of IBD clinical data (captured in standard of care practice) in a user-friendly and uniform manner. The BIRD Registry will be used to: Gather epidemiological data on IBD and generate aggregated summary reports to better understand the characteristics and treatment patterns of IBD patients at a national level. Conduct retrospective studies on epidemiological, safety and efficacy data on a vast area of patient types and medication classes. At the national level, all Belgian academic hospitals and most major non-academic hospitals are participating in the BIRD registry, bringing the total to 32 centres. Additional hospitals will join in the future. The BIRD Registry involves the collection of IBD clinical data captured in standard of care practice for patients with IBD, from diagnosis to the present. Data for each patient will be regularly updated whenever there is a change. The UR-CARE platform is available to individual participating sites (hospitals) and study groups (e.g., BIRD as the national study group for Belgium). Access to the UR-CARE platform requires a contract between IBDIM and the individual participating site or study group coordinator. Additionally, to participate in the BIRD study group, a separate study group agreement must be signed between BIRD (the study group coordinator) and the individual participating site. This agreement allows the generation of aggregated summary reports and facilitates retrospective study projects by granting the Study Group (comprising the Coordinator and Affiliated Centers) access to the pseudonymized medical data of the undersigned Individual Participant Centre within UR-CARE.

Resources

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Tags

  • crohn’s-disease
  • registry
  • ulcerative-colitis
  • inflammatory-bowel-disease

Topics

  • HEAL

Categories