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Interstitial cystitis is described in the MONDO definition as a rare chronic debilitating urogenital disease characterized by urinary frequency, urgency, and pelvic pain. Synonyms in the packet include bladder pain syndrome, painful bladder syndrome, interstitial cystitis/bladder pain syndrome (IC/BPS), and ulcerative cystitis. The packet's prevalence field lists a COMMON category with an estimate of 1 to 5 in 10,000, which differs from the definition's description of the disease as rare; the packet does not reconcile the two.
The MONDO definition names urinary frequency, urgency, and pelvic pain as the characterizing features. Structured phenotype annotations, frequency data, and age-of-onset categories are not populated in this packet.
The packet lists no associated genes and no inheritance patterns, and it does not certify a molecular mechanism or other cause for interstitial cystitis. Its causes are therefore not described here.
Diagnostic methods, criteria, and newborn screening information are not certified in this packet.
The packet's FDA-approved treatment records list two products with market status ACTIVE: Elmiron (pentosan polysulfate sodium, NDA, approved 1996-09-26) and Rimso-50 (dimethyl sulfoxide, NDA, approved 1978-04-04). Orphan drug records list Elmiron with an indication of treatment of interstitial cystitis and list nifedipine, sponsored by an individual physician, with status DESIGNATED for the same indication; orphan designation does not indicate approval or availability. One WITHDRAWN orphan record in the packet carries an indication unrelated to interstitial cystitis. Foundational therapies and supportive care approaches are not certified in this packet.
33 trials found
Prognosis and natural history are not certified in this packet.
The packet reports ClinicalTrials.gov records for interstitial cystitis. Examples include NCT05149573, a study of pulsed electromagnetic field therapy for female patients with IC/BPS (Wake Forest University Health Sciences; recruiting; start 2022-08-29); NCT06096597, a phase 2 study of amniotic membrane therapy (sponsor David Sheyn; recruiting; start 2024-07-24); and NCT02870738, a phase 2 comparison of bladder-directed and pelvic floor therapy (Corewell Health East; active, not recruiting; start 2017-04-21). Trial titles do not establish the interventions studied. The packet lists the International Painful Bladder Foundation and the Interstitial Cystitis Association as patient organizations.
Data assembled from 5 of 12 sources · Last updated Nov 2, 2026, 8:17 PM UTC
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European rare disease database
Genetic and Rare Diseases Info Center
AI-curated news mentioning interstitial cystitis
Updated Feb 18, 2026
A recent study published on PubMed explores the phenotypic characteristics and rare genetic variants associated with interstitial cystitis. This research enhances understanding of the genetic underpinnings of this complex condition.