Interstitial Cystitis/Bladder Pain Syndrome: Why a Global Patient Registry Is Critically Needed

Area of Science:

• Urology
• Patient Registries
• Chronic Pelvic Pain Syndromes

Background:

• Interstitial cystitis/bladder pain syndrome (IC/BPS) is a complex condition with significant impact on quality of life.
• Current research is limited by regional patient registries, hindering large-scale analysis and clinical trial recruitment.
• There is a need for a standardized, international approach to data collection for IC/BPS.

Purpose of the Study:

• To establish expert consensus on the rationale and components of a global patient registry for IC/BPS.
• To define the necessary patient and diagnostic characteristics for inclusion in the registry.
• To identify patient subgroups that may benefit from targeted therapies.

Main Methods:

• Formation of an expert working group comprising urologists and a urogynaecologist.
• Series of meetings in 2025 to discuss benefits, challenges, and practicalities of a global registry.
• Literature search of PubMed and consensus agreement on registry proposals.

Main Results:

• Development of a framework for a global IC/BPS registry for patients aged 18+ with specific symptom criteria.
• Identification of essential data points, including demographics, medical history, comorbidities, and validated questionnaires for pain, urinary symptoms, and quality of life.
• Consensus on collecting data on prior treatments, cystoscopy, and biopsy findings, emphasizing longitudinal patient-reported outcomes.

Conclusions:

• A global IC/BPS registry will overcome limitations of regional data by encompassing diverse patient populations.
• Facilitates efficient recruitment for clinical trials and enhances understanding of epidemiological trends and practice variations.
• Enables optimization of patient care and quality improvement initiatives worldwide.