RARE DISEASERESEARCH ATLAS

ORPHA:1302

Cryptogenic organizing pneumonia

low confidenceDisorder

Also known as: BOOP · Bronchiolitis obliterans organizing pneumonia · COP

Publications

12,177

Trials

5

Interventional, condition-specific

Researchers

1,237

Distinct authors in sample

Gene link

Readiness

3/6

Stages with a signal

Clinical definition (Orphanet)

A rare form of interstitial pneumonia characterized pathologically by organizing pneumonia (OP) that presents with nonspecific flu-like symptoms, as well as cough and dyspnea, and where no etiological agent is found.

How rare: How common this is has not been clearly measured.

Orphanet entry

Cross-references

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

Additional Mondo synonyms (5)

Organizing Pneumonia · bronchiolitis obliterans organizing pneumonia · cryptogenic organizing pneumonitis · organising pneumonia · organizing pneumonia

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.”

3/6 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

    12,177 matched papers (8,170 in last 10 years) Source

  3. Phenotype characterisedPresent

    30 HPO annotations (e.g. Fever; Increased total leukocyte count; Anorexia) Source

  4. Animal modelNot found

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

  5. Orphan designationNot found

    No FDA or EMA orphan-drug designation matched this disease via UMLS or preferred name Source

  6. Interventional trialPresent

    5 matched on ClinicalTrials.gov

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)

30

Associated phenotypes · MONDO:0015264

  • Fever
  • Increased total leukocyte count
  • Anorexia
  • Weight loss
  • Wheezing

Showing 5 of 30 — 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)

No designation matched this disease via UMLS or preferred name on the FDA OOPD mirror or EMA orphan register. Absence here is not proof that none exists under another wording.

Open Targets candidates

1

Drugs / clinical candidates · MONDO_0015264

CTD chemicals (MyDisease.info)

2 associated chemicals. Therapeutic evidence is listed first when present — not a treatment recommendation.

  • Steroids · therapeutic
  • Phenytoin · marker/mechanism

MyDisease.info · MONDO:0015264

Literature

Is anyone studying this?

12,177

12,177 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.

12,177 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).

8,170 in the last 10 years · low confidence

Phrase hits: 12,177 · MeSH hits: 0

Open Europe PMC search

Who's working on it?

1,237

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
    Inoue Y4 papers · 2026

    Second Division, Department of Internal Medicine, Hamamatsu University School of Medicine, Hamamatsu, Japan.

    Papers in Europe PMC
  2. 02
    Li X4 papers · 2026

    Department of Pediatrics The First Affiliated Hospital of Shandong First Medical University & Shandong Provincial Qianfoshan Hospital jinan Shandong China.

    Papers in Europe PMC
  3. 03
    Liu Y4 papers · 2026

    Department of Respirology, Hebei children's Hospital, Hebei Clinical Medicine Research Center for Children's Health and Diseases, Shijiazhuang, China.

    Papers in Europe PMC
  4. 04
    Suda T4 papers · 2025

    Second Department of Internal Medicine, Hamamatsu University School of Medicine, Japan.

    Papers in Europe PMC
  5. 05
    Toyoshima M4 papers · 2025

    Department of Respiratory Medicine, Hamamatsu Rosai Hospital, Japan.

    Papers in Europe PMC
  6. 06
    Wang Y4 papers · 2025

    Department of Respirology, Hebei children's Hospital, Hebei Clinical Medicine Research Center for Children's Health and Diseases, Shijiazhuang, China.

    Papers in Europe PMC
  7. 07
    Zhang L4 papers · 2025

    Department of Respirology, Hebei children's Hospital, Hebei Clinical Medicine Research Center for Children's Health and Diseases, Shijiazhuang, China.

    Papers in Europe PMC
  8. 08
    Zhou J4 papers · 2026

    Department of Respiratory Diseases, The First Affiliated Hospital, Zhejiang University School of Medicine, Hangzhou, China.

    Papers in Europe PMC
  9. 09
    Chen Y3 papers · 2026

    Department of Pulmonary and Critical Care Medicine, Shanghai Chest Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, P.R. China.

    Papers in Europe PMC
  10. 10
    Lee JS3 papers · 2025

    Graduate School of Medical Science and Engineering, Korea Advanced Institute of Science and Technology, Daejeon, Republic of Korea.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

5

interventional trials for this specific condition

5 interventional trials matched this specific condition name; none in our sample are currently recruiting. 1,758 trials are registered for pneumonia, the broader category — shown separately because they may or may not enrol this specific subtype.

Data as of 11 September 2026

5 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 89.2th percentile).

low confidence · 89.2th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

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

No currently recruiting studies in the matched set. Open the same search on ClinicalTrials.gov.

Broader category: pneumonia

1,758

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

2 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 14 · after dedupe 14 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 14 · 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 (14)

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 Cryptogenic organizing pneumonia — 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.

"Cryptogenic organizing pneumonia" OR "Bronchiolitis obliterans organizing pneumonia" OR "Organizing Pneumonia" OR "cryptogenic organizing pneumonitis" OR "organising pneumonia"

Run this search on Europe PMC

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

"Cryptogenic organizing pneumonia" OR "Bronchiolitis obliterans organizing pneumonia" OR "Organizing Pneumonia" OR "cryptogenic organizing pneumonitis" OR "organising pneumonia"

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: 5 interventional · 2 observational · 0 expanded access. Only interventional studies enter the trial headline.

Parent-category trials query:

"pneumonia"

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

Run this search on ClinicalTrials.gov

Synonyms dropped by stoplist: BOOP; COP

Confidence reasoning

  • Preferred label is multi-word and distinctive
  • 2 synonym(s) dropped by stoplist (may under-count)
  • No label/synonym collisions with other diseases in this corpus
  • Publication count (12177) is extremely high with unknown/missing prevalence — treat as possible over-matching, not proven research intensity

Ingested 2026-07-26T16:58:26.244Z