ORPHA:701
Alopecia universalis
Publications
1,707
93.4th percentile
Trials
17
Interventional, condition-specific
Researchers
890
Distinct authors in sample
Gene link
—
Readiness
2/6
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.”
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
1,707 matched papers (1,138 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
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)
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?
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=5449) is 41.
1,707 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).
1,138 in the last 10 years · high confidence · 93.4th 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 27 July 2026
17 interventional trials — more than 73% of diseases in the trials denominator have none at all (5114 of 7003; this disease is at the 93.9th percentile).
high confidence · 93.9th 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
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
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)
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
Conditions: Alopecia Areata · Alopecia Totalis · Alopecia Universalis · Hair Loss·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.
"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