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ORPHA:364043

ALK-positive large B-cell lymphoma

high confidenceDisorder

Also known as: ALK+ LBCL · ALK+ large B-cell lymphoma

Publications

289

68th percentile

Trials

6

Interventional, condition-specific

Researchers

1,018

Distinct authors in sample

Gene link

—

Readiness

2/6

Stages with a signal

Clinical definition (Orphanet)

A very rare variant of diffuse large B-cell lymphoma (DLBCL) mainly affecting middle-aged immunocompetent men and characterized by a consistent primary involvement of lymph nodes (mainly in the cervical and mediastinum lymph nodes) and with infrequent extra nodal involvement of the bone marrow and other extra-nodal sites (head and neck region, liver, spleen, and gastrointestinal tract). It has an aggressive disease course, and is associated with a poor prognosis.

Orphanet entry

Cross-references

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

Additional Mondo synonyms (3)

ALK-DLBCL · diffuse large B-cell lymphoma with expression of full-length ALK · diffuse large B-cell lymphoma with expression of full-length anaplastic lymphoma kinase

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

    289 matched papers (197 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

    6 matched on ClinicalTrials.gov (3 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

No drugs or clinical candidates returned for this Mondo ID on Open Targets.

CTD chemicals (MyDisease.info)

No CTD chemical associations returned for this Mondo ID.

Literature

Is anyone studying this?

289

289 papers have ever been published on this condition (under this name). For scale, breast cancer has over 700,000. Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=3967) is 59.

289 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).

197 in the last 10 years · high confidence · 68th percentile (publications denominator)

Phrase hits: 289 · MeSH hits: 0

Open Europe PMC search

Who's working on it?

1,018

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
    Takeuchi K8 papers · 2019

    Pathology Project for Molecular Targets, the Cancer Institute, Japanese Foundation for Cancer Research, Tokyo, Japan.

    Papers in Europe PMC
  2. 02
    Jaffe ES6 papers · 2019

    Hematopathology Section, Laboratory of Pathology, Center for Cancer Research, National Cancer Institute, Bethesda, MD. Electronic address: ejaffe@mail.nih.gov.

    Papers in Europe PMC
  3. 03
    Liu H6 papers · 2022

    Department of Hematopathology, The University of Texas MD Anderson Cancer Center, Houston, TX 77030, USA.

    Papers in Europe PMC
  4. 04
    Wang Y6 papers · 2026

    Forensic Center of Justice, Zhongnan Hospital of Wuhan University, Wuhan, China.

    Papers in Europe PMC
  5. 05
    Castillo JJ5 papers · 2026

    Division of Hematological Malignancies, Dana-Farber Cancer Institute, Harvard Medical School, Boston, MA.

    Papers in Europe PMC
  6. 06
    Medeiros LJ5 papers · 2025

    Department of Hematopathology, The University of Texas MD Anderson Cancer Center, Houston, TX 77030, USA.

    Papers in Europe PMC
  7. 07
    Chiarle R4 papers · 2025

    Department of Molecular Biotechnology and Health Sciences, University of Turin, Turin, Italy.

    Papers in Europe PMC
  8. 08
    Gao Z4 papers · 2023

    Department of Pathology, Beijing GoBroad Boren Hospital, Beijing, China.

    Papers in Europe PMC
  9. 09
    Li J4 papers · 2023

    Department of Hematology, The Affiliated Drum Tower Hospital of Medical School of Nanjing University Nanjing, 210008, PR China.

    Papers in Europe PMC
  10. 10
    Li M4 papers · 2021

    School of Basic Medical Sciences, Hebei University of Chinese Medicine, Shijiazhuang, 050200 Hebei Province, China.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

6

interventional trials for this specific condition

6 interventional trials matched this specific condition name; 3 currently recruiting in our sample.

Data as of 11 September 2026

6 interventional trials — more than 77.2% of diseases in the trials denominator have none at all (5501 of 7126; this disease is at the 90.1th percentile).

high confidence · 90.1th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

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

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 5 · after dedupe 5 · already on CT.gov 0 · kept 0 · parent 0 · uncertain 5 · 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 (5)

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 ALK-positive large B-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.

"ALK-positive large B-cell lymphoma" OR "ALK+ LBCL" OR "ALK+ large B-cell lymphoma" OR "ALK-DLBCL" OR "diffuse large B-cell lymphoma with expression of full-length ALK" OR "diffuse large B-cell lymphoma with expression of the full-length ALK" OR "diffuse large B-cell lymphoma with expression of full-length anaplastic lymphoma kinase" OR "diffuse large B-cell lymphoma with expression of the full-length anaplastic lymphoma kinase"

Run this search on Europe PMC

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

"ALK-positive large B-cell lymphoma" OR "ALK+ LBCL" OR "ALK+ large B-cell lymphoma" OR "ALK-DLBCL" OR "diffuse large B-cell lymphoma with expression of full-length ALK" OR "diffuse large B-cell lymphoma with expression of the full-length ALK" OR "diffuse large B-cell lymphoma with expression of full-length anaplastic lymphoma kinase" OR "diffuse large B-cell lymphoma with expression of the full-length anaplastic lymphoma kinase"

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: 6 interventional · 0 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

Confidence reasoning

  • Preferred label is multi-word and distinctive
  • No synonyms dropped by stoplist
  • No label/synonym collisions with other diseases in this corpus

Ingested 2026-07-27T14:47:16.911Z