ORPHA:2086
Optic pathway glioma
Clinical definition (Orphanet)
Optic pathway glioma (OPG) is a benign tumor that develop along the optic nerve (chiasm, tracts, and radiations) characterized by impairment or loss of vision and may be accompanied by diencephalic symptoms such as reduced growth and alteration in sleeping patterns. OPG are often linked to neurofibromatosis type 1 (NF1).
How rare: 1-9 / 1 000 000 — roughly one to nine people per million. In a city the size of Kolkata, perhaps a few dozen.
Is anyone studying this?
1,681
1,681 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=183) is 38.
1,681 papers since the earliest indexed year in this search — median last-10-year count for a rare disease in this dataset is 38 (publications denominator n=183).
1,258 in the last 10 years · high confidence · 95.4th percentile (publications denominator)
Is a treatment being tested?
23
trials for this specific condition
23 interventional trials matched this specific condition name; 2 currently recruiting in our sample. 1,037 trials are registered for glioma, the broader category — shown separately because they may or may not enrol this specific subtype.
Data as of 26 July 2026
1,037
trials for glioma, the broader category this belongs to
Trials registered for a broader category may or may not enrol people with this specific subtype — eligibility criteria vary, and the trial record often doesn't say. Worth raising with a clinician. How we count trials.
23 interventional trials — more than 59.2% of diseases in the trials denominator have none at all (151 of 255; this disease is at the 92th percentile).
high confidence · 92th percentile (trials denominator)
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.
Who's working on it?
1,081
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.
- 01Gutmann DH13 papers · 2026
Department of Neurology, Washington University School of Medicine, St Louis, Missouri, USA.
Papers in Europe PMC - 02Gupta A5 papers · 2026
Institute for Informatics, Data Science and Biostatistics, Washington University, Saint Louis, MO 63110, United States.
Papers in Europe PMC - 03Bouffet E4 papers · 2026
Division of Haematology/Oncology, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
Papers in Europe PMC - 04Chen Y4 papers · 2026
Department of Genetics, The University of Alabama at Birmingham, Alabama.
Papers in Europe PMC - 05Fisher MJ4 papers · 2024
Division of Oncology, Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Papers in Europe PMC - 06Hillis E4 papers · 2026
Institute for Informatics, Data Science and Biostatistics, Washington University, Saint Louis, MO 63110, United States.
Papers in Europe PMC - 07Kotch C4 papers · 2025
Division of Oncology, Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Papers in Europe PMC - 08Wang Y4 papers · 2026
Department of Ophthalmology, Shanghai Key Laboratory of Orbital Diseases and Ocular Oncology, Ninth People's Hospital, Shanghai JiaoTong University School of Medicine, Shanghai, P.R. China.
Papers in Europe PMC - 09Avery RA3 papers · 2026
Division of Ophthalmology, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
Papers in Europe PMC - 10Chatterjee A3 papers · 2026
Department of Radiation Oncology, Tata Memorial Hospital, TMC and Homi Bhabha National Institute, Mumbai, Maharashtra, India.
Papers in Europe PMC
Recruiting interventional trials
Trials testing a treatment from the matched ClinicalTrials.gov set
23 interventional trials matched after quoted-phrase search and title/condition post-filter.
Observational and natural-history studies
3 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.
Recruiting or not-yet-recruiting
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 below but are not added to the query string.
"Optic pathway glioma" OR "glioma of optic tract" OR "glioma of the optic tract" OR "glioma of the visual pathway" OR "glioma of visual pathway" OR "optic tract glioma" OR "visual pathway glioma"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Optic pathway glioma" OR "glioma of optic tract" OR "glioma of the optic tract" OR "glioma of the visual pathway" OR "glioma of visual pathway" OR "optic tract glioma" OR "visual pathway glioma" OR "visual pathway disorder"
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: 23 interventional · 3 observational · 0 expanded access. Only interventional studies enter the trial headline.
Cross-references (from Mondo): UMLS:C0796418 NCIT:C8567
Query health: ok — strategies attempted: phrase, recall-expansion; with hits: phrase, recall-expansion
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