ORPHA:252164
Benign schwannoma
Also known as: Neurilemmoma · Neurilemoma · Peripheral fibroblastoma
Publications
21,850
97.9th percentile
Trials
0
Interventional, condition-specific
Researchers
1,032
Distinct authors in sample
Gene link
—
Readiness
1/6
Stages with a signal
Clinical definition (Orphanet)
A rare benign peripheral nerve sheath tumor characterized by a usually encapsulated space-occupying lesion composed of differentiated neoplastic Schwann cells. It most commonly arises from peripheral nerves in the head and neck region and extensor aspects of the extremities, but also from spinal and cranial nerves, especially the vestibular nerve. The tumor may be asymptomatic or cause symptoms related to a mass effect. It grows slowly and only rarely undergoes malignant transformation.
How rare: 1-9 / 100 000 — about one to nine people per hundred thousand.
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.”
1/6 stages with a signal
Research-stage checklist from open sources (GenCC, literature, Monarch when enriched, ClinicalTrials.gov). Not a prognosis or care recommendation.
- Gene identifiedNot found
No GenCC disease–gene assertion in this build
- LiteraturePresent
21,850 matched papers (6,261 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 trialNot found
No matched interventional trial under our ClinicalTrials.gov rules
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?
21,850
21,850 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=5449) is 41.
21,850 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).
6,261 in the last 10 years · high confidence · 97.9th percentile (publications denominator)
Phrase hits: 21,850 · MeSH hits: 0
Who's working on it?
1,032
Distinct author names in 200 sampled papers — named people below.
Who's working on it?
No interventional trial matched this name; these authors publish on it in the sampled literature — a practical starting point for contact.
- 01Hayford KM3 papers · 2026
2Department of Neurosurgery, Mayo Clinic, Rochester, Minnesota; and.
Papers in Europe PMC - 02Li Z3 papers · 2026
Department of Neurosurgery, The First Affiliated Hospital of Wannan Medical College, Yijishan Hospital of Wannan Medical College, China.
Papers in Europe PMC - 03Spinner RJ3 papers · 2026
2Department of Neurosurgery, Mayo Clinic, Rochester, Minnesota; and.
Papers in Europe PMC - 04Wang H3 papers · 2026
Department of Neurosurgery, First Affiliated Hospital of Anhui Medical University, Hefei, China. doctorwanghui@hotmail.com.
Papers in Europe PMC - 05Al-Bitar A2 papers · 2026
Faculty of Medicine, Damascus University, Syrian Arab Republic.
Papers in Europe PMC - 06Baskoro W2 papers · 2024
Department of Neurosurgery, Soeradji Tirtonegoro Central Public Hospital, Klaten, Indonesia.
Papers in Europe PMC - 07Chen J2 papers · 2025
Department of Neurosurgery, The Second Affiliated Hospital of Zhejiang University School of Medicine, Hangzhou, Zhejiang, China.
Papers in Europe PMC - 08Datta A2 papers · 2026
Department of Neurosurgery, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Rae Barely Road, Lucknow, Uttar Pradesh, India.
Papers in Europe PMC - 09Dong X2 papers · 2026
Department of Neurosurgery, The Second Affiliated Hospital of Zhejiang University School of Medicine, Hangzhou, Zhejiang, China.
Papers in Europe PMC - 10Fan Z2 papers · 2026
Department of Imaging, Luoyang Central Hospital, Luoyang, China.
Papers in Europe PMC
Clinical research
Is a treatment being tested?
0
interventional trials for this specific condition
No interventional trial testing a treatment matched this specific condition name. 1 observational study did — shown below because natural-history and cohort work can be an important step toward a trial.
Data as of 27 July 2026
No matched interventional trials. This is true for 73% of diseases in the trials denominator (5114 of 7003). Here are the researchers publishing on it.
high confidence · 36.5th percentile (trials denominator)
Recruiting interventional trials
From the matched ClinicalTrials.gov set
No interventional trial testing a treatment was found for this specific condition name on ClinicalTrials.gov.
See who's working on it — people publishing on this disease are often the practical next contact when no trial is listed.
Observational and natural-history studies
1 observational study matches 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
- NCT04648462·RECRUITING·Proton Therapy Research Infrastructure- ProTRAIT- Neuro-oncology
Conditions: Astrocytoma · Ependymoma · Ganglioglioma · Oligodendroglioma·Matched via name phrase
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.
"Benign schwannoma" OR "Neurilemmoma" OR "Neurilemoma" OR "Peripheral fibroblastoma"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Benign schwannoma" OR "Neurilemmoma" OR "Neurilemoma" OR "Peripheral fibroblastoma"
Study-type breakdown: 0 interventional · 1 observational · 0 expanded access. Only interventional studies enter the trial headline.
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 2026-07-27T10:59:50.286Z