ORPHA:701
Alopecia universalis
Publications
1,707
87.9th percentile
Trials
17
Interventional, condition-specific
Researchers
890
Distinct authors in sample
Gene link
—
Readiness
3/6
Stages with a signal
Clinical definition (Orphanet)
A disorder of most severe form of alopecia areata, an inflammatory disease of the hair follicle, which is characterized by a complete loss of hair of the scalp and all the hair-bearing areas of the body.
How rare: 1-5 / 10 000 — about one to five people per ten thousand (still uncommon, but less ultra-rare).
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.
- Gene identifiedNot found
No GenCC disease–gene assertion in this build
- LiteraturePresent
1,707 matched papers (1,138 in last 10 years) Source
- Phenotype characterisedNot found
No HPO disease–phenotype associations via Monarch for these Mondo IDs
- Animal modelNot found
No Alliance genotype “model of” associations via Monarch for these Mondo IDs
- Orphan designationPartial
1 EMA designation (none yet with FDA orphan-indication approval) — e.g. Diphenylcyclopropenone Source
- Interventional trialPresent
17 matched on ClinicalTrials.gov (3 recruiting in sample)
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)
None returned for this Mondo ID. That often means “not linked under this ID,” not “no clinical features.”
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)
1
Designation · no FDA orphan-indication approval yet
- EMA DiphenylcyclopropenoneTreatment of alopecia universalis · 29/06/2006 · WithdrawnEMA designation
Sources: FDA OOPD · EMA orphan designations
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?
1,707
1,707 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.
1,707 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).
1,138 in the last 10 years · high confidence · 87.9th percentile (publications denominator)
Phrase hits: 1,707 · MeSH hits: 0
Who's working on it?
890
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.
- 01King B6 papers · 2025
Department of Dermatology, Yale School of Medicine, New Haven, Connecticut, USA.
Papers in Europe PMC - 02Mostaghimi A5 papers · 2025
Brigham and Women's Hospital, Boston, Massachusetts, USA.
Papers in Europe PMC - 03Ungar B5 papers · 2026
Department of Dermatology, Icahn School of Medicine at Mount Sinai, New York, New York, USA.
Papers in Europe PMC - 04
- 05
- 06Lipner SR4 papers · 2026
Israel Englander Department of Dermatology, Weill Cornell Medicine, New York, NY, USA.
Papers in Europe PMC - 07Senna MM4 papers · 2026
Department of Dermatology, Lahey Hospital & Medical Center, Burlington, Massachusetts; Department of Dermatology, Harvard Medical School, Boston, Massachusetts.
Papers in Europe PMC - 08Zhang Y4 papers · 2026
Department of Dermatology, The Second Hospital of Jilin University, Changchun, China.
Papers in Europe PMC - 09Basmanav FB3 papers · 2026
Institute of Human Genetics, University of Bonn, School of Medicine and University Hospital Bonn, Bonn, Germany.
Papers in Europe PMC - 10Betz RC3 papers · 2026
Institute of Human Genetics, University of Bonn, School of Medicine and University Hospital Bonn, Bonn, Germany.
Papers in Europe PMC
Clinical research
Is a treatment being tested?
17
interventional trials for this specific condition
17 interventional trials matched this specific condition name; 3 currently recruiting in our sample.
Data as of 11 September 2026
17 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 94.4th percentile).
high confidence · 94.4th percentile (trials denominator)
Recruiting interventional trials
From the matched ClinicalTrials.gov set
17 interventional trials matched after quoted-phrase search and title/condition post-filter.
- NCT06747611·RECRUITING·Evaluation of Microbiota Transplant Therapy in Patients With Alopecia Areata
Not reviewed·Conditions: Alopecia Areata · Alopecia Totalis · Alopecia Universalis·Matched via name phrase
- NCT07381556·RECRUITING·Cyclosporine Or Methotrexate for Pediatric Alopecia Areata: Routine Clinical Care Effectiveness Study
Not reviewed·Conditions: Alopecia Areata(AA) · Alopecia Areata (AA) · Alopecia Totalis/Universalis · Alopecia Universalis (AU)·Matched via name phrase
- NCT07406204·NOT YET RECRUITING·Tofacitinib vs Methotrexate for Severe Alopecia Areata (TOFA-MTX-AA)
Not reviewed·Conditions: Alopecia Areata · Alopecia Totalis (AT) · Alopecia Universalis·Matched via name phrase
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
- NCT06283316·RECRUITING·Systemic Treatments for Alopecia Areata Registry
Not reviewed·Conditions: Alopecia Areata · Alopecia Totalis · Alopecia Universalis · Hair Loss·Matched via name phrase
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 1 · after dedupe 1 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 1 · dropped 0 · fetched 2026-07-29
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 (1)
- isrctn·ISRCTN14007390·No longer recruiting·STS-01 for the treatment of alopecia areata
skipped — LLM skipped (--skip-llm)
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 Alopecia universalis — check Associations / patient organisations on that page.
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.
"Alopecia universalis"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Alopecia universalis"
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: 17 interventional · 3 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 2026-07-26T14:56:54.858Z