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ORPHA:37202

Interstitial cystitis

high confidenceDisorder

Also known as: Bladder pain syndrome · IC/BPS · IC/PBS · Interstitial cystitis/bladder pain syndrome · Interstitial cystitis/painful bladder syndrome · Painful bladder syndrome

Publications

10,772

95.1th percentile

Trials

156

Interventional, condition-specific

Researchers

953

Distinct authors in sample

Gene link

—

Readiness

4/6

Stages with a signal

Clinical definition (Orphanet)

A rare non-infectious, chronic and most often disease of the urinary bladder. It is characterized by varying combinations and extent of pain, urinary frequency (pollakisuria), nocturia and urgency. Interstitial cystitis (IC) has a broad intersection with Bladder Pain Syndrome (BPS) and Overactive Bladder (OAB).

How rare: 1-5 / 10 000 — about one to five people per ten thousand (still uncommon, but less ultra-rare).

Orphanet entry

Cross-references

Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.

Additional Mondo synonyms (6)

bladder pain syndrome · chronic interstitial cystitis · interstitial cystitis, chronic · interstitial cystitis/bladder pain syndrome · interstitial cystitis/painful bladder syndrome · painful bladder syndrome

Research stages

Trial readiness signals

Where this condition sits on an open-data research pipeline — not how close a treatment is, and not medical advice. Empty stages often mean “not in these databases under this Mondo ID,” not “impossible.”

4/6 stages with a signal

An interventional trial matched this condition name on ClinicalTrials.gov — see trials below.

  1. Gene identifiedNot found

    No GenCC disease–gene assertion in this build

  2. LiteraturePresent

    10,772 matched papers (5,660 in last 10 years) Source

  3. Phenotype characterisedPresent

    19 HPO annotations (e.g. Abnormality of the genital system; Depression; Autoimmunity) Source

  4. Animal modelNot found

    No Alliance genotype “model of” associations via Monarch for these Mondo IDs

  5. Orphan designationPresent

    2 FDA · 3 EMA designations (1 FDA orphan-indication approval) — e.g. Nifedipine Source

  6. Interventional trialPresent

    156 matched on ClinicalTrials.gov (21 recruiting in sample)

Biology

Genes and phenotypes

Gene–disease validity from GenCC, plus phenotypes and animal models joined from Monarch Initiative via Mondo ID — not a clinical diagnosis aid.

Do we know what causes it?

Not yet — the cause hasn't been pinned down in GenCC.

No strong gene–disease assertion joined for this Orphanet entity.

Phenotypes (Monarch / HPO)

19

Associated phenotypes · MONDO:0018301

  • Abnormality of the genital system
  • Depression
  • Autoimmunity
  • Abnormality of tumor necrosis factor secretion
  • Abnormality of the bladder

Showing 5 of 19 — open Monarch for the full list.

Animal models (Monarch / Alliance)

None returned for this Mondo ID. Empty here is not proof that no model organism work exists under another name or gene.

Monarch fetch 2026-07-29

Therapies

Designations, candidates, and chemicals

FDA OOPD and EMA orphan designations, Open Targets clinical candidates, and CTD chemical associations via MyDisease.info. These never change the interventional-trial headline.

Orphan designation (FDA · EMA)

5

Designations · 1 with FDA orphan-indication approval

  • FDA NifedipineInterstitial Cystitis · 1991-06-13 · Not FDA Approved for Orphan Indication
  • EMA pentosan polysulfate sodiumTreatment of interstitial cystitis · 30/05/2016 · PositiveEMA designation
  • EMA pentosan polysulfate sodiumTreatment of interstitial cystitis · 12/01/2017 · PositiveEMA designation
  • FDA Pentosan polysulfate sodium (Elmiron)Interstitial Cystitis · 1985-08-07
  • EMA pentosan polysulfate sodiumTreatment of interstitial cystitis · 15/01/2015 · WithdrawnEMA designation

Sources: FDA OOPD · EMA orphan designations

Open Targets candidates

49

Drugs / clinical candidates · MONDO_0018301

CTD chemicals (MyDisease.info)

11 associated chemicals · 20 pathways. Therapeutic evidence is listed first when present — not a treatment recommendation.

  • Cidofovir · therapeutic
  • Hydroxyzine · therapeutic
  • Prednisolone · therapeutic
  • suplatast tosilate · therapeutic
  • Tetracycline · therapeutic
  • Busulfan · marker/mechanism
  • Cyclophosphamide · marker/mechanism
  • Hydrochloric Acid · marker/mechanism
  • Indomethacin · marker/mechanism
  • Ketamine · marker/mechanism
  • Nitrofurantoin · marker/mechanism

Pathways: Cytokine-cytokine receptor interaction; Chemokine signaling pathway; Toll-like receptor signaling pathway; RIG-I-like receptor signaling pathway; Cytosolic DNA-sensing pathway; IL-17 signaling pathway; TNF signaling pathway; Influenza A

MyDisease.info · MONDO:0018301

Literature

Is anyone studying this?

10,772

10,772 papers — among the better-studied rare conditions, though still a fraction of common-disease literature (breast cancer: over 700,000). Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=3967) is 59.

10,772 papers since the earliest indexed year in this search — median last-10-year count for a rare disease in this dataset is 59 (publications denominator n=3967).

5,660 in the last 10 years · high confidence · 95.1th percentile (publications denominator)

Phrase hits: 10,772 · MeSH hits: 0

Open Europe PMC search

Who's working on it?

953

Distinct author names in 200 sampled papers — named people below.

Who's working on it?

People publishing on this condition (sampled Europe PMC records). Affiliation is the most recent found in that sample.

  1. 01
    Kuo HC19 papers · 2026

    Institute of Medical Sciences, Tzu Chi University, Hualien, Taiwan.

    Papers in Europe PMC
  2. 02
    Jhang JF12 papers · 2026

    Department of Urology, Hualien Tzu Chi Hospital, Buddhist Tzu Chi Medical Foundation and Tzu Chi University, Hualien, Taiwan.

    Papers in Europe PMC
  3. 03
    Jiang YH10 papers · 2026

    Institute of Medical Sciences, Tzu Chi University, Hualien, Taiwan.

    Papers in Europe PMC
  4. 04
    Yu WR10 papers · 2026

    Department of Nursing, Hualien Tzu Chi Hospital, Buddhist Tzu Chi Medical Foundation, Hualien, Taiwan.

    Papers in Europe PMC
  5. 05
    Akiyama Y6 papers · 2026

    Department of Urology, Shinshu University School of Medicine, Matsumoto, Nagano, Japan. yoshiyuki-akiyama@uiowa.edu.

    Papers in Europe PMC
  6. 06
    Walker SJ6 papers · 2026

    Wake Forest Institute for Regenerative Medicine, Winston-Salem, NC, USA.

    Papers in Europe PMC
  7. 07
    Chen YC5 papers · 2026

    Graduate Institute of Clinical Medicine, College of Medicine, Kaohsiung Medical University, Kaohsiung, Taiwan.

    Papers in Europe PMC
  8. 08
    Li W5 papers · 2026

    Department of Pathology, Wake Forest School of Medicine, Winston-Salem, North Carolina, USA.

    Papers in Europe PMC
  9. 09
    Luo Y5 papers · 2026

    Department of Urology, University of Iowa, Iowa City, IA, USA. yi-luo@uiowa.edu.

    Papers in Europe PMC
  10. 10
    Zhang J5 papers · 2026

    Department of Urology, Beijing Chaoyang Hospital, Capital Medical University, Beijing 100020, China.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

156

interventional trials for this specific condition

156 interventional trials matched this specific condition name; 21 currently recruiting in our sample. 80 trials are registered for cystitis, the broader category — shown separately because they may or may not enrol this specific subtype.

Data as of 11 September 2026

156 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 99th percentile).

high confidence · 99th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

156 interventional trials matched after quoted-phrase search and title/condition post-filter.

Broader category: cystitis

80

Interventional trials for the parent category, exclusive of NCT IDs already counted above. Eligibility for this subtype is not guaranteed.

Worth raising with a clinician. How we count trials.

Recruiting under the broader category

Observational and natural-history studies

62 observational studies match this condition. These do not test a treatment and are not counted in the interventional-trial headline, but they are genuine research: natural-history work often defines the endpoints needed for a future rare-disease trial, and families may be able to enroll.

Recruiting or not-yet-recruiting

Open the complete matched search on ClinicalTrials.gov

Other registries (secondary)

Broader net from EU CTIS, ISRCTN, and ICTRP when available — deduped against ClinicalTrials.gov IDs already counted above. Dual-model LLM relevance gates what we keep. These rows are not added to the interventional headline.

raw 51 · after dedupe 51 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 51 · dropped 0 · fetched 2026-07-29

Source notes: ictrp: Error: ICTRP public search unavailable (WHO portal is SPA-only; SOAP needs partnership). Tried: https://apps.who.int/tri

No secondary-registry studies passed dual-model relevance for this condition name (after dedupe).

Uncertain / not reviewed (51)

Where to find support

Condition-specific patient organisations, when Orphanet lists them, are on the disease’s Orphanet page. We also link umbrella groups that support undiagnosed and ultra-rare families.

Orphanet entry for Interstitial cystitis — check Associations / patient organisations on that page.

India — NPRD

Last verified 2026-07-26

This ORPHAcode is not on our curated NPRD list (direct or Mondo-parent match). That does not decide clinical eligibility; families in India should ask a notified Centre of Excellence about current coverage.

Hand-curated for this project. ORPHAcode mappings are best-effort and may be incomplete or imprecise for umbrella categories. Parent (Mondo) matches mean the policy lists a broader category — confirm eligibility with a Centre of Excellence. Financial entitlements summarised from public policy statements and may change. This is not official government guidance.

How we counted this

Europe PMC query (preferred label + any corrected label + Orphanet and Mondo exact synonyms, stoplisted; unioned with resolved MeSH labels when available). UMLS / OMIM / NCIT cross-references are stored on the overview but are not added to the query string.

"Interstitial cystitis" OR "Bladder pain syndrome" OR "IC/BPS" OR "IC/PBS" OR "Interstitial cystitis/bladder pain syndrome" OR "Interstitial cystitis/painful bladder syndrome" OR "Painful bladder syndrome" OR "chronic interstitial cystitis" OR "interstitial cystitis, chronic"

Run this search on Europe PMC

ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):

"Interstitial cystitis" OR "Bladder pain syndrome" OR "IC/BPS" OR "IC/PBS" OR "Interstitial cystitis/bladder pain syndrome" OR "Interstitial cystitis/painful bladder syndrome" OR "Painful bladder syndrome" OR "chronic interstitial cystitis" OR "interstitial cystitis, chronic"

Interventional trials matched via: phrase (mesh = registered under a MeSH descriptor no name phrase would catch; recall-expansion = gene / selected parent terms used only for trials).

Study-type breakdown: 156 interventional · 62 observational · 0 expanded access. Only interventional studies enter the trial headline.

Parent-category trials query:

"cystitis"

Query health: ok — strategies attempted: phrase; with hits: phrase

Run this search on ClinicalTrials.gov

Confidence reasoning

  • Preferred label is multi-word and distinctive
  • No synonyms dropped by stoplist
  • No label/synonym collisions with other diseases in this corpus

Ingested 2026-07-26T23:58:33.831Z