RARE DISEASERESEARCH ATLAS
Open navigation menu

ORPHA:33276

Kaposi sarcoma

medium confidenceDisorder

Publications

34,103

97.7th percentile

Trials

124

Interventional, condition-specific

Researchers

1,370

Distinct authors in sample

Gene link

—

Readiness

5/6

Stages with a signal

Clinical definition (Orphanet)

A rare vascular tumor that is characterized by human herpes virus 8 (HHV-8)-induced endothelial inflammatory neoplasm that develops with various clinically distinct settings, manifesting mostly as cutaneous lesions, or mucosal or visceral involvement.

How rare: 1-9 / 1 000 000 — roughly one to nine people per million. In a city the size of Kolkata, perhaps a few dozen.

Orphanet entry

Cross-references

Joined from Mondo / Orphanet. MeSH labels may enter searches; UMLS / OMIM / NCIT are stored for reference.

Additional Mondo synonyms (3)

KS · Kaposi's sarcoma · Kaposi's sarcoma (disease)

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.”

5/6 stages with a signal

An interventional trial matched this condition name on ClinicalTrials.gov — see trials below.

  1. Gene identifiedNot found

    No GenCC disease–gene assertion in this build

  2. LiteraturePresent

    34,103 matched papers (12,879 in last 10 years) Source

  3. Phenotype characterisedPresent

    26 HPO annotations (e.g. Abnormality of the spleen; Immunodeficiency; Lymphoproliferative disorder) Source

  4. Animal modelPresent

    2 genotype models (Mus musculus) Source

  5. Orphan designationPresent

    4 FDA designations (3 FDA orphan-indication approvals) — e.g. alitretinoin Source

  6. Interventional trialPresent

    124 matched on ClinicalTrials.gov (16 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)

26

Associated phenotypes · MONDO:0005055

  • Abnormality of the spleen
  • Immunodeficiency
  • Lymphoproliferative disorder
  • Abnormality of the liver
  • Recurrent herpes

Showing 5 of 26 — open Monarch for the full list.

Animal models (Monarch / Alliance)

2

Model associations linked to this Mondo ID

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)

4

Designations · 3 with FDA orphan-indication approval

  • FDA alitretinoinKaposi Sarcoma · 2021-01-12 · Not FDA Approved for Orphan Indication
  • FDA H-Leu-Pro-Pro-Ser-Arg-OHKaposi Sarcoma · 2012-09-20 · Not FDA Approved for Orphan Indication
  • FDA ThalidomideKaposi's Sarcoma · 1998-07-29 · Not FDA Approved for Orphan Indication
  • FDA pomalidomide (POMALYST)Kaposi Sarcoma · 2018-04-04

Sources: FDA OOPD · EMA orphan designations

Open Targets candidates

80

Drugs / clinical candidates · MONDO_0005055

CTD chemicals (MyDisease.info)

No CTD chemical associations returned for this Mondo ID.

Literature

Is anyone studying this?

34,103

34,103 papers — among the better-studied rare conditions, though still a fraction of common-disease literature (breast cancer: over 700,000). Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=3967) is 59.

34,103 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).

12,879 in the last 10 years · medium confidence · 97.7th percentile (publications denominator)

Phrase hits: 34,103 · MeSH hits: 0

Open Europe PMC search

Who's working on it?

1,370

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
    Martin J5 papers · 2026

    Department of Epidemiology and Biostatistics, University of California, San Francisco, San Francisco, CA.

    Papers in Europe PMC
  2. 02
    Wang Y5 papers · 2026

    Department of Dermatology and Venereology, People's Hospital of Xinjiang Uygur Autonomous Region, No. 91, Tianchi Road, Tianshan District, Urumqi, Xinjiang, 830001, China.

    Papers in Europe PMC
  3. 03
    Li Y4 papers · 2026

    Centre of Reference for Genetic Research in Infection and Immunity, Research Institute, McGill University Health Centre, Montreal, Quebec, Canada.

    Papers in Europe PMC
  4. 04
    Semeere A4 papers · 2026

    Infectious Diseases Institute, Makerere University College of Health Sciences, Kampala, Uganda.

    Papers in Europe PMC
  5. 05
    Cesarman E3 papers · 2026

    Department of Pathology and Laboratory Medicine, Weill Cornell Medicine, New York, NY.

    Papers in Europe PMC
  6. 06
    Chen Y3 papers · 2026

    State Key Laboratory of Virology and Biosafety, College of Life Sciences, Wuhan University, Wuhan, China.

    Papers in Europe PMC
  7. 07
    Cona A3 papers · 2026

    Department of Infectious Diseases and Antimicrobial Stewardship, Mediterranean Institute for Transplantation and Advanced Specialized Therapies (IRCCS ISMETT), Palermo, Italy.

    Papers in Europe PMC
  8. 08
    Ding Y3 papers · 2026

    Department of Dermatology and Venereology, People's Hospital of Xinjiang Uygur Autonomous Region, No. 91, Tianchi Road, Tianshan District, Urumqi, Xinjiang, 830001, China.

    Papers in Europe PMC
  9. 09
    Huang X3 papers · 2026

    Longgang Central Hospital, Shenzhen, China.

    Papers in Europe PMC
  10. 10
    Labo N3 papers · 2026

    Viral Oncology Section, AIDS & Cancer Virus Program, Frederick National Laboratory; Frederick, MD, USA.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

124

interventional trials for this specific condition

124 interventional trials matched this specific condition name; 16 currently recruiting in our sample.

Data as of 11 September 2026

124 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 98.8th percentile).

medium confidence · 98.8th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

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

Observational and natural-history studies

23 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

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 18 · after dedupe 18 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 18 · 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 (18)

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 Kaposi sarcoma — check Associations / patient organisations on that page.

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 on the overview but are not added to the query string.

"Kaposi sarcoma" OR "Kaposi's sarcoma" OR "Kaposi's sarcoma (disease)"

Run this search on Europe PMC

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

"Kaposi sarcoma" OR "Kaposi's sarcoma" OR "Kaposi's sarcoma (disease)"

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: 124 interventional · 23 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

Synonyms dropped by stoplist: KS

Confidence reasoning

  • Preferred label is multi-word and distinctive
  • 1 synonym(s) dropped by stoplist (may under-count)
  • No label/synonym collisions with other diseases in this corpus

Ingested 2026-07-26T23:34:02.034Z