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ORPHA:98841

Anaplastic large cell lymphoma

medium confidenceDisorder

Also known as: ALCL · CD30 positive anaplastic large cell lymphoma · Ki-1 positive anaplastic large cell lymphoma · Primary systemic ALCL · sACL

Publications

12,853

98.3th percentile

Trials

196

Interventional, condition-specific

Researchers

1,207

Distinct authors in sample

Gene link

—

Readiness

2/6

Stages with a signal

Clinical definition (Orphanet)

A rare and aggressive peripheral T-cell non-Hodgkin lymphoma, belonging to the group of CD30-positive lymphoproliferative disorders, which affects lymph nodes and extranodal sites. It is comprised of two sub-types, based on the expression of a protein called anaplastic lymphoma kinase (ALK): ALK positive and ALK negative ALCL.

How rare: 1-9 / 100 000 — about one to nine people per hundred thousand.

Orphanet entry

Cross-references

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

Additional Mondo synonyms (6)

CD30 Positive anaplastic large cell lymphoma · Ki-1 lymphoma · Ki-1+ ALCL · Ki-1+ anaplastic large cell lymphoma · anaplastic large cell lymphoma · primary systemic ALCL

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.

  1. Gene identifiedNot found

    No GenCC disease–gene assertion in this build

  2. LiteraturePresent

    12,853 matched papers (7,687 in last 10 years) Source

  3. Phenotype characterisedNot checked

    Not yet enriched from Monarch / HPO

  4. Animal modelNot checked

    Not yet enriched from Monarch / Alliance

  5. Orphan designationNot checked

    FDA/EMA orphan-drug designation not enriched yet

  6. Interventional trialPresent

    196 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)

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?

12,853

12,853 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=5449) is 41.

12,853 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).

7,687 in the last 10 years · medium confidence · 98.3th percentile (publications denominator)

Phrase hits: 12,853 · MeSH hits: 11

Open Europe PMC search

Who's working on it?

1,207

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
    Santanelli Di Pompeo F6 papers · 2026

    Faculty of Medicine and Psychology, Sapienza University of Rome, Department of Neuroscience, Mental Health and Sense Organs (NESMOS), Sant'Andrea University Hospital, Rome, Italy. Electronic address: fabio.santanelli@uniroma1.it.

    Papers in Europe PMC
  2. 02
    Babin L5 papers · 2026

    CRCT (Cancer Research Center of Toulouse), UMR-1037, UMR-5071, Institut Universitaire du Cancer, Univ Toulouse, CNRS, INSERM, 31037, Toulouse, France.

    Papers in Europe PMC
  3. 03
    Firmani G5 papers · 2026

    Faculty of Medicine and Psychology, Sapienza University of Rome, Department of Neuroscience, Mental Health and Sense Organs (NESMOS), Sant'Andrea University Hospital, Rome, Italy.

    Papers in Europe PMC
  4. 04
    Lamant L5 papers · 2026

    CRCT (Cancer Research Center of Toulouse), UMR-1037, UMR-5071, Institut Universitaire du Cancer, Univ Toulouse, CNRS, INSERM, 31037, Toulouse, France.

    Papers in Europe PMC
  5. 05
    Li S5 papers · 2026

    Dermatology Hospital, Southern Medical University, Guangzhou, Guangdong Province, China.

    Papers in Europe PMC
  6. 06
    Medeiros LJ5 papers · 2026

    Department of Hematopathology, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA.

    Papers in Europe PMC
  7. 07
    Meggetto F5 papers · 2026

    CRCT (Cancer Research Center of Toulouse), UMR-1037, UMR-5071, Institut Universitaire du Cancer, Univ Toulouse, CNRS, INSERM, 31037, Toulouse, France. fabienne.meggetto@inserm.fr.

    Papers in Europe PMC
  8. 08
    Pyronnet S5 papers · 2026

    CRCT (Cancer Research Center of Toulouse), UMR-1037, UMR-5071, Institut Universitaire du Cancer, Univ Toulouse, CNRS, INSERM, 31037, Toulouse, France.

    Papers in Europe PMC
  9. 09
    Sorotos M5 papers · 2026

    Faculty of Medicine and Psychology, Sapienza University of Rome, Department of Neuroscience, Mental Health and Sense Organs (NESMOS), Sant'Andrea University Hospital, Rome, Italy.

    Papers in Europe PMC
  10. 10
    Wang Y5 papers · 2026

    Department of Pathology, Xuanwu Hospital, Capital Medical University, Beijing, China.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

196

interventional trials for this specific condition

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

Data as of 27 July 2026

196 interventional trials — more than 73% of diseases in the trials denominator have none at all (5114 of 7003; this disease is at the 99.2th percentile).

medium confidence · 99.2th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

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

Observational and natural-history studies

14 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

General rare disease registries you may be eligible for

These studies enroll across many rare conditions. They are not counted as evidence that anyone is studying this specific disease.

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

"Anaplastic large cell lymphoma" OR "CD30 positive anaplastic large cell lymphoma" OR "Ki-1 positive anaplastic large cell lymphoma" OR "Primary systemic ALCL" OR "Ki-1 lymphoma" OR "Ki-1+ ALCL" OR "Ki-1+ anaplastic large cell lymphoma"

Run this search on Europe PMC

MeSH descriptor terms unioned into the query: Lymphoma, Large-Cell, Anaplastic

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

"Anaplastic large cell lymphoma" OR "CD30 positive anaplastic large cell lymphoma" OR "Ki-1 positive anaplastic large cell lymphoma" OR "Primary systemic ALCL" OR "Ki-1 lymphoma" OR "Ki-1+ ALCL" OR "Ki-1+ anaplastic large cell lymphoma" OR "Lymphoma, Large-Cell, Anaplastic"

Interventional trials matched via: both, phrase, mesh (mesh = registered under a MeSH descriptor no name phrase would catch; recall-expansion = gene / selected parent terms used only for trials).

Study-type breakdown: 196 interventional · 14 observational · 1 expanded access. Only interventional studies enter the trial headline.

Query health: ok — strategies attempted: phrase, mesh; with hits: phrase, mesh

Run this search on ClinicalTrials.gov

Synonyms dropped by stoplist: ALCL; sACL

Confidence reasoning

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

Ingested 2026-07-27T05:33:35.715Z