ORPHA:251639
Subependymoma
Publications
3,960
Trials
6
Interventional, condition-specific
Researchers
1,302
Distinct authors in sample
Gene link
—
Readiness
2/6
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.
Cross-references
Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.
- MONDO:0007667
- MeSH:D018315
- UMLS:C0206725
- NCIT:C3795
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.”
2/6 stages with a signal
An interventional trial matched this condition name on ClinicalTrials.gov — see trials below.
- Gene identifiedNot found
No GenCC disease–gene assertion in this build
- LiteraturePresent
3,960 matched papers (2,469 in last 10 years) Source
- Phenotype characterisedNot checked
Not yet enriched from Monarch / HPO
- Animal modelNot checked
Not yet enriched from Monarch / Alliance
- Orphan designationNot checked
FDA/EMA orphan-drug designation not enriched yet
- 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)
Not enriched in this build — Monarch phenotype joins were not run for this record.
Animal models (Monarch / Alliance)
Not enriched in this build.
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=5449) is 41.
3,960 papers since the earliest indexed year in this search — median last-10-year count for a rare disease in this dataset is 41 (publications denominator n=5449).
2,469 in the last 10 years · low confidence
Phrase hits: 3,958 · MeSH hits: 5
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.
- 01Zhang J8 papers · 2026
Departments of Neurosurgery, the First Medical Center, PLA General Hospital, Beijing , China.
Papers in Europe PMC - 02Wang Y7 papers · 2026
Department of Radiation Oncology, The Fourth Hospital of Hebei Medical University, 12 Jiankang Road, Shijiazhuang 050011, China.
Papers in Europe PMC - 03Hawkins C6 papers · 2026
Arthur and Sonia Labatt Brain Tumour Research Center, Toronto, ONT, Canada.
Papers in Europe PMC - 04Tabori U6 papers · 2026
Division of Hematology/Oncology, The Hospital for Sick Children, Toronto, ONT, Canada.
Papers in Europe PMC - 05Liu Y5 papers · 2026
Department of Radiology, Children's Hospital of Soochow University, Suzhou, China.
Papers in Europe PMC - 06Saito R4 papers · 2026
Department of Neurosurgery, Nagoya University Hospital, Nagoya, Aichi, Japan.
Papers in Europe PMC - 07Wang C4 papers · 2026
Department of Neurosurgery, Beijing Tiantan Hospital, Beijing Neurosurgical Institute, Capital Medical University, Beijing, China.
Papers in Europe PMC - 08Bennett J3 papers · 2026
Division of Hematology/Oncology, The Hospital for Sick Children, Toronto, ONT, Canada.
Papers in Europe PMC - 09Bettegowda C3 papers · 2026
1Department of Neurosurgery, Johns Hopkins University School of Medicine, Baltimore, Maryland.
Papers in Europe PMC - 10Bouffet 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 27 July 2026
6 interventional trials — more than 73% of diseases in the trials denominator have none at all (5114 of 7003; this disease is at the 89th percentile).
low confidence · 89th 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.
Where to find support
We do not yet link condition-specific patient organisations. These umbrella groups support undiagnosed and ultra-rare families:
India — NPRD
Last verified 2026-07-26This 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"
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