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

Abstract

Purpose: The purpose of this article is to establish expert consensus on the rationale for, and components of, a global patient registry for interstitial cystitis/bladder pain syndrome (IC/BPS). Our goal is to highlight what a comprehensive international patient registry can add to the growing body of IC/BPS-focused research and summarize the committee's rationale for inclusion or exclusion of certain patient and diagnostic characteristics to identify sub-groups of patients who will benefit from targeted therapy.

Materials and methods: An expert working group was formed from members of the Global Consensus on IC/BPS meeting. The working group consisted of four Urologists and a Urogynaecologist, and held a series of meetings in 2025 to achieve consensus on the benefits, hurdles and practical aspects of developing a global registry for IC/BPS. Literature search of the PubMed database was also performed where relevant, and all members agreed on the final proposals.

Results: The framework for an IC/BPS global registry was developed inclusive of male and female patients ages 18 years and older, who have symptoms of pain, pressure or discomfort related to the bladder, along with lower urinary tract symptoms, that have persisted for 3 or more months, in the absence of confusable disorders. A comprehensive list of patient data points including demographic, history-related, and comorbid conditions was developed. Additionally, validated questionnaires were identified for inclusion that assess domains of pain, urinary symptoms and quality of life. Consensus was reached regarding collecting data on prior treatment, cystoscopy findings and biopsy results where applicable. Lastly, importance was placed on patient-reported questionnaire data that can be input longitudinally by patients to lessen the burden of data collection by providers. Technical, legal and financial aspects were addressed as potential barriers.

Conclusions: A global registry for IC/BPS would overcome the limitations of current regional registries by including large numbers of patients from varied geographical locations, allowing for more efficient recruitment of patients for clinical trials. Understanding epidemiological trends and global variation in practice would enable optimization of care and quality improvement worldwide.