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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

96.4th 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 found

    No HPO disease–phenotype associations via Monarch for these Mondo IDs

  4. Animal modelNot found

    No Alliance genotype “model of” associations via Monarch for these Mondo IDs

  5. Orphan designationNot found

    No FDA or EMA orphan-drug designation matched this disease via UMLS or preferred name Source

  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)

None returned for this Mondo ID. That often means “not linked under this ID,” not “no clinical features.”

Animal models (Monarch / Alliance)

None returned for this Mondo ID. Empty here is not proof that no model organism work exists under another name or gene.

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)

No designation matched this disease via UMLS or preferred name on the FDA OOPD mirror or EMA orphan register. Absence here is not proof that none exists under another wording.

Open Targets candidates

65

Drugs / clinical candidates · MONDO_0020325

CTD chemicals (MyDisease.info)

5 associated chemicals · 214 pathways. Therapeutic evidence is listed first when present — not a treatment recommendation.

  • BEAM regimen · therapeutic
  • CHOP protocol · therapeutic
  • Crizotinib · therapeutic
  • Methotrexate · therapeutic
  • tanespimycin · therapeutic

Pathways: EGFR tyrosine kinase inhibitor resistance; Antifolate resistance; MAPK signaling pathway; Ras signaling pathway; cAMP signaling pathway; Cytokine-cytokine receptor interaction; Chemokine signaling pathway; NF-kappa B signaling pathway

MyDisease.info · MONDO:0020325

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=3967) is 59.

12,853 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).

7,687 in the last 10 years · medium confidence · 96.4th 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 11 September 2026

196 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; 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.

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 15 · after dedupe 15 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 15 · dropped 0 · fetched 2026-07-30

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 (15)

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 Anaplastic large cell lymphoma — 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.

"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