BIRD registry

Introduction

BIRD is building a national database to collect epidemiological data about IBD in Belgium and data on the use of therapies in the treatment of IBD.

The BIRD Registry, a national IBD registry, uses the UR-CARE platform provided by ECCO (European Crohn´s and Colitis Organisation - ECCO - UR-CARE (ecco-ibd.eu)) to collect IBD data (captured in standard of care practice). The aim of the UR-CARE platform is to improve daily clinical practice and to perform future research studies (locally, nationally and internationally) in the field of IBD. It can also be used to gain better insights in (specific) IBD characteristics and treatments locally, nationally and internationally.

UR-CARE is available to study groups (e.g. BIRD is the Belgian, national study group within UR-CARE) and to individual participating centers.

The BIRD Registry will be used to perform retrospective studies and to obtain a comprehensive overview (summary reports) of IBD characteristics/demographics at a national level. 

As of November 2023, data of more than 2400 patients from 12 centers have already been entered in UR-CARE. An additional 20 centers are in the on-boarding process to join the BIRD Registry. This includes all Belgium academic centers and most major non-academic hospitals in this country, bringing the total to 32 centers participating in the BIRD registry.

 

Want to participate in the BIRD Registry?

Contact info@birdgroup.be

Basic info to collect:
  • Patient
  • Disease characteristics
  • Endoscopy
  • Imaging
  • Conventional treatment
  • Immunomodulators
  • Biologics
  • Surgical treatments
  • Follow-up
  • Comorbidities / Complications
  • Pregnancy
  • Screening for infections / Vaccinations
  • Notes (trials, allergies, biological samples)

 

Logistical support of the setup of the BIRD registry is provided by Galapagos, Pfizer, Abbvie, Lilly and Janssen.

       

 

Growth of the BIRD Registry: