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ORPHA:86875

Adult T-cell leukemia/lymphoma

medium confidenceDisorder

Also known as: ATLL

Publications

13,454

94.6th percentile

Trials

113

Interventional, condition-specific

Researchers

1,194

Distinct authors in sample

Gene link

—

Readiness

3/6

Stages with a signal

Clinical definition (Orphanet)

A rare, virus associated tumor due to human T-cell leukemia virus type 1 or human T-cell lymphotropic virus type 1 (HTLV-1) and is characterized by the presence of anti-HTLV-1 antibodies, and malignant, mature, medium-sized T cells with condensed chromatin and polylobated nuclei. The malignant cells exhibit a mature CD4+ T cells and express CD2, CD5, CD25, CD45RO, HLA-DR, and T-cell receptor αβ. Presentation is heterogeneous and is typically of aggressive leukemia or lymphoma, variable skin eruptions, and visceral organ involvement.

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 (5)

T-cell leukaemia of adults · T-cell leukemia of adults · adult T-cell leukaemia · adult T-cell leukemia · adult T-cell leukemia/lymphoma

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.”

3/6 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

    13,454 matched papers (5,180 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 designationPresent

    3 FDA designations (2 FDA orphan-indication approvals) — e.g. brentuximab vedotin Source

  6. Interventional trialPresent

    113 matched on ClinicalTrials.gov (7 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)

3

Designations · 2 with FDA orphan-indication approval

  • FDA brentuximab vedotinadult T-cell leukemia/lymphoma · 2016-05-23 · Not FDA Approved for Orphan Indication
  • FDA mogamulizumabadult T-cell leukemia/lymphoma · 2011-07-14 · Not FDA Approved for Orphan Indication
  • FDA brentuximab vedotin (Adcetris)Angioimmunoblastic T-cell lymphoma adult T-cell leukemia/lymphoma Peripheral T-Cell Lymphoma Enteropathy-Associated T-Cell Lymphoma Anaplastic Large Cell Lymphoma · 2008-10-23

Sources: FDA OOPD · EMA orphan designations

Open Targets candidates

53

Drugs / clinical candidates · MONDO_0019471

CTD chemicals (MyDisease.info)

10 associated chemicals · 417 pathways. Therapeutic evidence is listed first when present — not a treatment recommendation.

  • (2E,4E,6E,10E)-3,7,11,15-tetramethyl-2,4,6,10,14-hexadecapentaenoic acid · therapeutic
  • Arsenic Trioxide · therapeutic
  • Bortezomib · therapeutic
  • Docosahexaenoic Acids · therapeutic
  • Emodin · therapeutic
  • Resveratrol · therapeutic
  • Ritonavir · therapeutic
  • sodium arsenite · therapeutic
  • Zidovudine · therapeutic
  • Zoledronic Acid · therapeutic

Pathways: Inositol phosphate metabolism; Metabolic pathways; EGFR tyrosine kinase inhibitor resistance; Platinum drug resistance; Ribosome biogenesis in eukaryotes; Proteasome; MAPK signaling pathway; ErbB signaling pathway

MyDisease.info · MONDO:0019471

Literature

Is anyone studying this?

13,454

13,454 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.

13,454 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).

5,180 in the last 10 years · medium confidence · 94.6th percentile (publications denominator)

Phrase hits: 13,454 · MeSH hits: 0

Open Europe PMC search

Who's working on it?

1,194

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
    Fuji S18 papers · 2026

    Department of Hematology, Osaka International Cancer Institute, Osaka, Japan. Electronic address: fujishige1231@gmail.com.

    Papers in Europe PMC
  2. 02
    Yoshimitsu M16 papers · 2026

    Department of Hematology and Rheumatology, Kagoshima University Hospital, Kagoshima, Japan.

    Papers in Europe PMC
  3. 03
    Tokunaga M14 papers · 2026

    Department of Hematology, Imamura General Hospital, Kagoshima, Japan.

    Papers in Europe PMC
  4. 04
    Fukuda T13 papers · 2026

    Department of Hematopoietic Stem Cell Transplantation, National Cancer Center Hospital, Tokyo, Japan.

    Papers in Europe PMC
  5. 05
    Fukushima T12 papers · 2026

    Laboratory of Hematoimmunology, School of Health Sciences, Faculty of Medicine, University of the Ryukyus, Ginowan 901-2720, Japan.

    Papers in Europe PMC
  6. 06
    Itonaga H11 papers · 2026

    Transfusion and Cell Therapy Unit, Nagasaki University Hospital, Nagasaki, Japan.

    Papers in Europe PMC
  7. 07
    Uchimaru K11 papers · 2026

    Department of Hematology/Oncology, Research Hospital, The Institute of Medical Science, The University of Tokyo, Tokyo, Japan.

    Papers in Europe PMC
  8. 08
    Ito A10 papers · 2026

    Department of Hematopoietic Stem Cell Transplantation, National Cancer Center Hospital, Tokyo, Japan.

    Papers in Europe PMC
  9. 09
    Kato T10 papers · 2026

    Department of Hematology, Nagasaki University Hospital, Nagasaki, Japan.

    Papers in Europe PMC
  10. 10
    Ishitsuka K9 papers · 2026

    Department of Hematology and Rheumatology, Kagoshima University.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

113

interventional trials for this specific condition

113 interventional trials matched this specific condition name; 7 currently recruiting in our sample.

Data as of 11 September 2026

113 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 98.6th percentile).

medium confidence · 98.6th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

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

Observational and natural-history studies

6 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 13 · after dedupe 13 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 13 · 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 (13)

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 Adult T-cell leukemia/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.

"Adult T-cell leukemia/lymphoma" OR "T-cell leukaemia of adults" OR "T-cell leukaemia of the adults" OR "T-cell leukemia of adults" OR "T-cell leukemia of the adults" OR "adult T-cell leukaemia" OR "adult T-cell leukemia"

Run this search on Europe PMC

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

"Adult T-cell leukemia/lymphoma" OR "T-cell leukaemia of adults" OR "T-cell leukaemia of the adults" OR "T-cell leukemia of adults" OR "T-cell leukemia of the adults" OR "adult T-cell leukaemia" OR "adult T-cell leukemia"

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: 113 interventional · 6 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: ATLL

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 2026-07-27T03:15:54.724Z