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ORPHA:217067

Pouchitis

medium confidenceDisorder

Publications

4,788

91th percentile

Trials

41

Interventional, condition-specific

Researchers

1,152

Distinct authors in sample

Gene link

—

Readiness

4/6

Stages with a signal

Clinical definition (Orphanet)

A rare intestinal disease characterized by non-specific inflammation of the ileal reservoir following ileal pouch anal anastomosis surgery. It generally occurs after the restoration of the fecal stream through the pouch and may be classified as acute or chronic, depending on the symptom duration (less or more than 4 weeks). Clinical presentation is variable and unspecific and commonly includes increased stool frequency and fluidity, rectal bleeding, abdominal cramps, bowel urgency, tenesmus, and nocturnal bowel incontinence.

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.

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

    4,788 matched papers (2,330 in last 10 years) Source

  3. Phenotype characterisedPresent

    10 HPO annotations (e.g. Diarrhea; Abdominal pain; Abdominal cramps) Source

  4. Animal modelNot found

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

  5. Orphan designationPresent

    5 FDA · 2 EMA designations (5 FDA orphan-indication approvals) — e.g. vedolizumab Source

  6. Interventional trialPresent

    41 matched on ClinicalTrials.gov (9 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)

10

Associated phenotypes · MONDO:0005312

  • Diarrhea
  • Abdominal pain
  • Abdominal cramps
  • Clostridium difficile colitis
  • Anal pain

Showing 5 of 10 — 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)

7

Designations · 5 with FDA orphan-indication approval

  • FDA vedolizumabPouchitis · 2021-03-15 · Not FDA Approved for Orphan Indication
  • FDA metronidazolePouchitis · 2011-04-26 · Not FDA Approved for Orphan Indication
  • FDA metronidazolePouchitis · 2008-09-17 · Not FDA Approved for Orphan Indication
  • FDA alicaforsenPouchitis · 2008-06-24 · Not FDA Approved for Orphan Indication
  • FDA ClotrimazolePouchitis · 2005-06-14 · Not FDA Approved for Orphan Indication
  • EMA MetronidazoleTreatment of pouchitis · 21/06/2011 · PositiveEMA designation
  • EMA alicaforsenTreatment of pouchitis · 15/05/2009 · PositiveEMA designation

Sources: FDA OOPD · EMA orphan designations

Open Targets candidates

15

Drugs / clinical candidates · MONDO_0005312

CTD chemicals (MyDisease.info)

No CTD chemical associations returned for this Mondo ID.

Literature

Is anyone studying this?

4,788

4,788 papers have been published on this condition. That is a real research literature — still far smaller than common diseases (breast cancer: over 700,000 papers). Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=3967) is 59.

4,788 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).

2,330 in the last 10 years · medium confidence · 91th percentile (publications denominator)

Phrase hits: 4,788 · MeSH hits: 187

Open Europe PMC search

Who's working on it?

1,152

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
    Barnes EL14 papers · 2026

    Division of Gastroenterology and Hepatology, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.

    Papers in Europe PMC
  2. 02
    Kayal M8 papers · 2026

    Division of Gastroenterology, Icahn School of Medicine at Mount Sinai, New York, New York, USA .

    Papers in Europe PMC
  3. 03
    Farraye FA7 papers · 2026

    Department of Gastroenterology and Hepatology, Mayo Clinic, Jacksonville, FL, USA.

    Papers in Europe PMC
  4. 04
    Segal JP7 papers · 2026

    Department of Gastroenterology, Royal Melbourne Hospital, Parkville, VIC, Australia.

    Papers in Europe PMC
  5. 05
    Shen B7 papers · 2026

    Columbia University Irving Medical Center/Herbert Irving Pavilion, New York, New York.

    Papers in Europe PMC
  6. 06
    Fischman M6 papers · 2026

    Department of Military Medicine, Faculty of Medicine, Hebrew University of Jerusalem, Jerusalem, Israel.

    Papers in Europe PMC
  7. 07
    Hashash JG6 papers · 2026

    Department of Gastroenterology and Hepatology, Mayo Clinic, Jacksonville, FL, USA.

    Papers in Europe PMC
  8. 08
    Herfarth HH6 papers · 2026

    Division of Gastroenterology and Hepatology, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.

    Papers in Europe PMC
  9. 09
    Jairath V6 papers · 2026

    Division of Gastroenterology, Department of Medicine, Western University, London, Ontario, Canada; Alimentiv, London, Ontario, Canada. Electronic address: vjairath@uwo.ca.

    Papers in Europe PMC
  10. 10
    Alsakarneh S5 papers · 2026

    Department of Medicine, University of Missouri-Kansas City, Kansas City, MO, USA.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

41

interventional trials for this specific condition

41 interventional trials matched this specific condition name; 9 currently recruiting in our sample.

Data as of 11 September 2026

41 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 96.8th percentile).

medium confidence · 96.8th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

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

Observational and natural-history studies

7 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.

None of the matched observational studies is currently listed as 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 5 · after dedupe 5 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 5 · dropped 0 · fetched 2026-07-30

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 (5)

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 Pouchitis — 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.

"Pouchitis"

Run this search on Europe PMC

MeSH descriptor terms unioned into the query: Pouchitis

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

"Pouchitis"

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

Study-type breakdown: 41 interventional · 7 observational · 0 expanded access. Only interventional studies enter the trial headline.

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

Run this search on ClinicalTrials.gov

Confidence reasoning

  • Preferred label is short or not clearly distinctive
  • No synonyms dropped by stoplist
  • No label/synonym collisions with other diseases in this corpus

Ingested 2026-07-27T09:45:16.034Z