ORPHA:370052
SCALP syndrome
Also known as: Sebaceous nevus-CNS malformations-aplasia cutis congenital-limbal dermoid-pigmented nevus syndrome · Sebaceous nevus-central nervous system malformations-aplasia cutis congenital-limbal dermoid-pigmented nevus syndrome
Query health: suspect — Source fetch failed for trials.
Clinical definition (Orphanet)
SCALP syndrome is a rare skin disease characterized by the association of sebaceous nevus and aplasia cutis congenita (usually on the scalp and face) in conjunction with limbal dermoid of the eye, a giant melanocytic nevus and variable central nervous system abnormalities, including , hydrocephalus, neurocutaneous melanosis, arachnoid cysts, and diffuse unilateral hemisphere enlargement.
How rare: <1 / 1 000 000 — fewer than one in a million. In a city the size of Kolkata, that might mean on the order of fifteen people.
Is anyone studying this?
54
54 papers have ever been published on this condition (under this name). For scale, breast cancer has over 700,000. Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=183) is 38.
54 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).
39 in the last 10 years · medium confidence · 51.4th percentile (publications denominator)
Is a treatment being tested?
—
trials for this specific condition
We could not load trial data for this condition right now.
Data as of 26 July 2026
medium confidence
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?
204
Distinct author names in 54 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.
- 01Wollina U3 papers · 2025
Department of Dermatology and Allergology, Städtisches Klinikum Dresden, Academic Teaching Hospital, Dresden, Germany. Electronic address: Uwe.Wollina@klinikum-dresden.de.
Papers in Europe PMC - 02Nguyen CTH2 papers · 2026
Department of Dermatology, University of Medicine and Pharmacy at Ho Chi Minh City, Ho Chi Minh City, Vietnam.
Papers in Europe PMC - 03Pham N2 papers · 2026
Department of Dermatology, University of Medicine and Pharmacy at Ho Chi Minh City, Ho Chi Minh City, Vietnam.
Papers in Europe PMC - 04Scott MJ Jr2 papers · 2007
Seattle Dermatology Center, 509 Olive Way, Seattle, WA 98101, USA.
Papers in Europe PMC - 05Trüeb RM2 papers · 2023
Department of Dermatology, Center for Dermatology and Hair Diseases, Wallisellen, Zurich, Switzerland.
Papers in Europe PMC - 06Van TT2 papers · 2026
Department of Dermatology, University of Medicine and Pharmacy at Ho Chi Minh City, Ho Chi Minh City, Vietnam.
Papers in Europe PMC - 07Abbas O1 paper · 2022
Department of Dermatology, American University of Beirut Medical Center, Beirut, Lebanon. Electronic address: ossamaabbas2003@yahoo.com.
Papers in Europe PMC - 08Abdullah W1 paper · 2024
Department of Plastic Surgery, Bahawal Victoria Hospital, Bahawalpur, Pakistan
Papers in Europe PMC - 09Ahmad SF1 paper · 2024
Department of Pharmacology and Toxicology, College of Pharmacy, King Saud University, Riyadh 11451, Saudi Arabia.
Papers in Europe PMC - 10
Recruiting interventional trials
Trials testing a treatment from the matched ClinicalTrials.gov set
Trial data could not be loaded for this build. This is not the same as finding zero interventional trials.
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.
"SCALP syndrome" OR "Sebaceous nevus-CNS malformations-aplasia cutis congenital-limbal dermoid-pigmented nevus syndrome" OR "Sebaceous nevus-central nervous system malformations-aplasia cutis congenital-limbal dermoid-pigmented nevus syndrome"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
(empty)
Cross-references (from Mondo): UMLS:C4751599
Query health: suspect — strategies attempted: phrase; with hits: phrase
Confidence reasoning
- Preferred label is short or not clearly distinctive
- No synonyms dropped by stoplist
- No label/synonym collisions with other diseases in this corpus