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ORPHA:251639

Subependymoma

low confidenceDisorder

Publications

3,960

Trials

6

Interventional, condition-specific

Researchers

1,302

Distinct authors in sample

Gene link

—

Readiness

3/6

Stages with a signal

Clinical definition (Orphanet)

Subependymoma is a rare and slow growing type of ependymoma, often presenting in middle-aged adults, found more commonly in men than in women, usually located in the fourth and lateral ventricles and manifesting with variable symptoms including headache, nausea, and loss of balance. In some cases it can be asymptomatic. It is usually associated with a better prognosis than other forms of ependymoma.

How rare: <1 / 1 000 000 — fewer than one in a million. In a city the size of Kolkata, that might mean on the order of fifteen people.

Orphanet entry

Cross-references

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

Additional Mondo synonyms (7)

SUBEPENDYMOMA, benign · WHO grade I ependymal neoplasm · WHO grade I ependymal tumor · WHO grade I ependymal tumour · subependymal astrocytoma · subependymal glioma · subependymoma

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

    3,960 matched papers (2,469 in last 10 years) Source

  3. Phenotype characterisedPresent

    15 HPO annotations (e.g. Vomiting; Ependymoma; Migraine) 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

    6 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)

15

Associated phenotypes · MONDO:0007667

  • Vomiting
  • Ependymoma
  • Migraine
  • Pain
  • Spinal cord tumor

Showing 5 of 15 — 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

No drugs or clinical candidates returned for this Mondo ID on Open Targets.

CTD chemicals (MyDisease.info)

No CTD chemical associations returned for this Mondo ID.

Literature

Is anyone studying this?

3,960

3,960 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.

3,960 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).

2,469 in the last 10 years · low confidence

Phrase hits: 3,958 · MeSH hits: 5

Open Europe PMC search

Who's working on it?

1,302

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
    Zhang J8 papers · 2026

    Departments of Neurosurgery, the First Medical Center, PLA General Hospital, Beijing , China.

    Papers in Europe PMC
  2. 02
    Wang Y7 papers · 2026

    Department of Radiation Oncology, The Fourth Hospital of Hebei Medical University, 12 Jiankang Road, Shijiazhuang 050011, China.

    Papers in Europe PMC
  3. 03
    Hawkins C6 papers · 2026

    Arthur and Sonia Labatt Brain Tumour Research Center, Toronto, ONT, Canada.

    Papers in Europe PMC
  4. 04
    Tabori U6 papers · 2026

    Division of Hematology/Oncology, The Hospital for Sick Children, Toronto, ONT, Canada.

    Papers in Europe PMC
  5. 05
    Liu Y5 papers · 2026

    Department of Radiology, Children's Hospital of Soochow University, Suzhou, China.

    Papers in Europe PMC
  6. 06
    Saito R4 papers · 2026

    Department of Neurosurgery, Nagoya University Hospital, Nagoya, Aichi, Japan.

    Papers in Europe PMC
  7. 07
    Wang C4 papers · 2026

    Department of Neurosurgery, Beijing Tiantan Hospital, Beijing Neurosurgical Institute, Capital Medical University, Beijing, China.

    Papers in Europe PMC
  8. 08
    Bennett J3 papers · 2026

    Division of Hematology/Oncology, The Hospital for Sick Children, Toronto, ONT, Canada.

    Papers in Europe PMC
  9. 09
    Bettegowda C3 papers · 2026

    1Department of Neurosurgery, Johns Hopkins University School of Medicine, Baltimore, Maryland.

    Papers in Europe PMC
  10. 10
    Bouffet E3 papers · 2026

    Section of Pediatric-Oncology, Department of Oncology, Aga Khan University Hospital, Stadium Road, P.O. Box 3500, Karachi, 74800, Pakistan.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

6

interventional trials for this specific condition

6 interventional trials matched this specific condition name; none in our sample are currently recruiting.

Data as of 11 September 2026

6 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 90.1th percentile).

low confidence · 90.1th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

6 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.

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 60 · after dedupe 59 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 59 · 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 (59)

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 Subependymoma — 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.

"Subependymoma" OR "SUBEPENDYMOMA, benign" OR "WHO grade I ependymal neoplasm" OR "WHO grade I ependymal tumor" OR "WHO grade I ependymal tumour" OR "subependymal astrocytoma" OR "subependymal glioma"

Run this search on Europe PMC

MeSH descriptor terms unioned into the query: Glioma, Subependymal

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

"Subependymoma" OR "SUBEPENDYMOMA, benign" OR "WHO grade I ependymal neoplasm" OR "WHO grade I ependymal tumor" OR "WHO grade I ependymal tumour" OR "subependymal astrocytoma" OR "subependymal glioma" OR "Glioma, Subependymal"

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: 6 interventional · 0 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
  • Publication count (3960) is implausibly high for prevalence class "<1 / 1 000 000" — treat as possible over-matching, not a measure of research intensity

Ingested 2026-07-27T10:51:02.881Z