RARE DISEASERESEARCH ATLAS

ORPHA:2612

Linear nevus sebaceus syndrome

high confidence

Also known as: Nevus sebaceus of Jadassohn · Nevus sebaceus syndrome · Organoid nevus syndrome · Schimmelpenning syndrome · Solomon syndrome

Clinical definition (Orphanet)

A rare nevus syndrome characterized by the association of an nevus sebaceous with a broad spectrum of abnormalities that affect many organ systems, most commonly the eye, skeletal and central nervous system.

How rare: How common this is has not been clearly measured.

Orphanet entry

Is anyone studying this?

931

931 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.

931 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).

389 in the last 10 years · high confidence · 89.3th percentile (publications denominator)

Is a treatment being tested?

369

trials for this specific condition

369 interventional trials matched this specific condition name; 145 currently recruiting in our sample.

Data as of 26 July 2026

369 interventional trials — more than 59.2% of diseases in the trials denominator have none at all (151 of 255; this disease is at the 99th percentile).

high confidence · 99th percentile (trials denominator)

Do we know what causes it?

Yes — we know a specific gene responsible (KRAS).

GenCC classification: Strong.

Who's working on it?

874

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.

  1. 01
    Zhang X4 papers · 2026

    State Key Laboratory of Medical Molecular Biology, Institute of Basic Medical Sciences, Chinese Academy of Medical Sciences & Peking Union Medical College, Beijing, 100730, China.

    Papers in Europe PMC
  2. 02
    Nischal KK3 papers · 2026

    UPMC Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania, USA.

    Papers in Europe PMC
  3. 03
    Singh P3 papers · 2024

    Department of Radiodiagnosis, Postgraduate Institute of Medical Education and Research, Chandigarh, India.

    Papers in Europe PMC
  4. 04
    Verma P3 papers · 2024

    Department of Dermatology and STD, Vardhaman Mahavir Medical College and Safdarjang hospital, New Delhi, India.

    Papers in Europe PMC
  5. 05
    Zhang J3 papers · 2022

    Department of Dermatology, Xinhua Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China.

    Papers in Europe PMC
  6. 06
    Zhang Q3 papers · 2025

    Department of Pediatric Hematology-Oncology, Xinhua Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China.

    Papers in Europe PMC
  7. 07
    Agrawal S2 papers · 2024

    Oculoplasty and Orbital Tumor Services, Dr. Rajendra Prasad Centre for Ophthalmic Sciences, All India Institute of Medical Sciences, New Delhi, India.

    Papers in Europe PMC
  8. 08
    Bajaj MS2 papers · 2024

    Oculoplasty and Orbital Tumor Services, Dr. Rajendra Prasad Centre for Ophthalmic Sciences, All India Institute of Medical Sciences, New Delhi, India.

    Papers in Europe PMC
  9. 09
    Bhankhodia V2 papers · 2025

    Department of Pathology, AIIMS Rajkot, Gujarat - 360110, India.

    Papers in Europe PMC
  10. 10
    Cao Y2 papers · 2022

    Department of Dermatology, Xinhua Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China.

    Papers in Europe PMC

Recruiting interventional trials

Trials testing a treatment from the matched ClinicalTrials.gov set

369 interventional trials matched after quoted-phrase search and title/condition post-filter.

Observational and natural-history studies

29 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

Open the complete matched search on ClinicalTrials.gov

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 2026-07-26

This 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.

"Linear nevus sebaceus syndrome" OR "Nevus sebaceus of Jadassohn" OR "Nevus sebaceus syndrome" OR "Organoid nevus syndrome" OR "Schimmelpenning syndrome" OR "Solomon syndrome" OR "Nevus sebaceous of Jadassohn" OR "Schimmelpenning-Feuerstein-Mims syndrome, somatic mosaic" OR "linear sebaceous Nevus" OR "organoid Nevus"

Run this search on Europe PMC

ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):

"Linear nevus sebaceus syndrome" OR "Nevus sebaceus of Jadassohn" OR "Nevus sebaceus of the Jadassohn" OR "Nevus sebaceus syndrome" OR "Organoid nevus syndrome" OR "Schimmelpenning syndrome" OR "Solomon syndrome" OR "Nevus sebaceous of Jadassohn" OR "Nevus sebaceous of the Jadassohn" OR "Schimmelpenning-Feuerstein-Mims syndrome, somatic mosaic" OR "linear sebaceous Nevus" OR "organoid Nevus" OR "KRAS"

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: 369 interventional · 29 observational · 6 expanded access. Only interventional studies enter the trial headline.

Cross-references (from Mondo): OMIM:163200 UMLS:C4552097 NCIT:C4678

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

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