Swedish Inflammatory Bowel Disease Register (SWIBREG) - a nationwide quality register

Area of Science:

• Gastroenterology
• Clinical Epidemiology
• Health Informatics

Background:

• Inflammatory bowel disease (IBD) is a chronic condition with rising incidence, posing challenges for research due to limited detailed patient data.
• Lack of comprehensive data on disease phenotype, patient-reported outcomes, and treatments hinders effective IBD research and patient follow-up.
• Existing research highlights the need for robust data collection to understand IBD progression and treatment efficacy.

Purpose of the Study:

• To review the Swedish IBD quality register (SWIBREG) and its utility in IBD research.
• To assess the scope and depth of data collected within SWIBREG.
• To evaluate SWIBREG's contribution to understanding IBD patient populations and disease management.

Main Methods:

• Review of the SWIBREG database, including user and patient questionnaire data.
• Analysis of data linkage between SWIBREG and the Swedish National Patient Register (NPR).
• Examination of data points including disease phenotype, treatments, patient-reported outcomes, and disease activity.

Main Results:

• SWIBREG, established in 2005, contains data on 46,400 IBD patients, including Crohn's disease, ulcerative colitis, and unclassified IBD.
• Data linkage with NPR shows a 100% positive predictive value for IBD diagnosis and covers 59.0% of patients receiving specific treatments.
• The register captures comprehensive data on therapies (conventional, biological), surgery, smoking, disease activity, and patient-reported outcomes (PROMs/PREMs).

Conclusions:

• SWIBREG is a valuable resource for patients with IBD, offering a platform for improved disease management.
• The register provides healthcare professionals and researchers with an ideal opportunity to study IBD phenotypes, activity, and treatment outcomes.
• SWIBREG facilitates detailed examination of patient-reported measures and hospital-administered drugs in IBD care.