ORPHA:79138
Bickerstaff brainstem encephalitis
Publications
505
88.3th percentile
Trials
0
Interventional, condition-specific
Researchers
925
Distinct authors in sample
Gene link
—
Readiness
1/6
Stages with a signal
Clinical definition (Orphanet)
A rare autoimmune encephalitis/ characterized by disturbances of consciousness, ophthalmoplegia, , and hyperreflexia. It has common clinical features with Miller Fisher syndrome.
How rare: How common this is has not been clearly measured.
Cross-references
Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.
- MONDO:0019208
- UMLS:C1960543
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
505 matched papers (411 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?
505
505 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.
505 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).
411 in the last 10 years · high confidence · 88.3th percentile (publications denominator)
Phrase hits: 505 · MeSH hits: 0
Who's working on it?
925
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.
- 01Finsterer J9 papers · 2025
Neurology & Neurophysiology Center, Vienna, Austria. fipaps@yahoo.de.
Papers in Europe PMC - 02Zhang L7 papers · 2025
Department of Neurology, Children's Hospital of Fudan University, Shanghai, China.
Papers in Europe PMC - 03Scorza FA4 papers · 2023
Disciplina de Neurociência, Universidade Federal de São Paulo/Escola Paulista de Medicina (UNIFESP/EPM), São Paulo, Brasil.
Papers in Europe PMC - 04Li L3 papers · 2026
Department of Neurology, Shenzhen Second People's Hospital, Shenzhen, China.
Papers in Europe PMC - 05Li M3 papers · 2025
Department of Neurology, YEDA Hospital, 23-1 Economic and Technological Development Area, Yantai, Shandong, China.
Papers in Europe PMC - 06Liu K3 papers · 2025
Department of Pediatric Neurology, The Affiliated Hospital of Qingdao University, No. 1677 Wutaishan Road, Qingdao, Shandong, 266000, China.
Papers in Europe PMC - 07Margolin E3 papers · 2025
Department of Ophthalmology and Vision Sciences, University of Toronto, Toronto, Ontario, Canada.
Papers in Europe PMC - 08Santoro JD3 papers · 2024
Division of Child Neurology, Department of Neurology, Stanford University, Palo Alto, CA, USA.
Papers in Europe PMC - 09Wang X3 papers · 2022
Department of Neurology, YEDA Hospital, 23-1 Economic and Technological Development Area, Yantai, Shandong, China.
Papers in Europe PMC - 10Acerra GM2 papers · 2024
Neurology Unit, University Hospital "San Giovanni di Dio e Ruggi d'Aragona", University of Salerno, Salerno, Italy.
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 on ClinicalTrials.gov (observational studies and pan-disease registries are listed separately when present).
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.
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.
"Bickerstaff brainstem encephalitis"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Bickerstaff brainstem encephalitis"
Study-type breakdown: 0 interventional · 0 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 2026-07-27T02:01:25.003Z