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ORPHA:443167

NUT midline carcinoma

low confidenceDisorder

Also known as: NMC

Publications

1,548

Trials

11

Interventional, condition-specific

Researchers

1,218

Distinct authors in sample

Gene link

—

Readiness

2/6

Stages with a signal

Clinical definition (Orphanet)

A rare tumor characterized by a rapidly growing mass usually arising along the midline, defined by the presence of NUTM1 rearrangements. Histopathological examination shows a poorly differentiated carcinoma, often with evidence of squamous differentiation. Patients present with unspecific signs and symptoms due to mass effect, depending on the location. Extensive local invasion of adjacent structures, lymph node involvement, and distant metastatic disease are often present at the time of diagnosis. Prognosis is generally poor.

How rare: <1 / 1 000 000 — fewer than one in a million. In a city the size of Kolkata, that might mean on the order of fifteen people.

Orphanet entry

Cross-references

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

Additional Mondo synonyms (5)

Midline carcinoma of children and Young adults with NUT rearrangement · NUT Midline carcinoma · NUT carcinoma · carcinoma with t(15;19)(q13;p13.1) translocation · nuclear protein in testis midline carcinoma

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

    1,548 matched papers (1,267 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

    11 matched on ClinicalTrials.gov (5 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?

1,548

1,548 papers have been published on this condition. That is a real research literature — still far smaller than common diseases (breast cancer: over 700,000 papers). Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=5449) is 41.

1,548 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).

1,267 in the last 10 years · low confidence

Phrase hits: 1,548 · MeSH hits: 0

Open Europe PMC search

Who's working on it?

1,218

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
    French CA11 papers · 2026

    Department of Pathology, Brigham and Women's Hospital, Harvard Medical School, Boston, Massachusetts. Electronic address: cfrench@bwh.harvard.edu.

    Papers in Europe PMC
  2. 02
    Zhang Y11 papers · 2026

    Department of Pediatric Oncology, Sun Yat-Sen University Cancer Center, 651 East Dongfeng Road, Guangzhou, 510060, Guangdong, China.

    Papers in Europe PMC
  3. 03
    Zhang J9 papers · 2026

    Department of Respiratory and Critical Care Medicine, Shanghai Geriatric Medical Center, Zhongshan Hospital Minhang Division, Fudan University, Shanghai, China. Electronic address: suze0503@163.com.cn.

    Papers in Europe PMC
  4. 04
    Li X8 papers · 2026

    Clinical Research Center (CRC), Medical Pathology Center (MPC), Cancer Early Detection and Treatment Center (CEDTC) and Translational Medicine Research Center (TMRC), Chongqing University Three Gorges Hospital, Chongqing University, Wanzhou District, Chongqing 404100, China; Chongqing Technical Innovation Center for Quality Evaluation and Identification of Authentic Medicinal Herbs, Wanzhou District, Chongqing 404100, China; School of Medicine Chongqing University, Chongqing University, Shapingba District, Chongqing 400030, China.

    Papers in Europe PMC
  5. 05
    Wang Y8 papers · 2026

    Department of Otolaryngology Head and Neck Surgery，China-Japan Friendship Hospital，Beijing，100029，China.

    Papers in Europe PMC
  6. 06
    Ye Z7 papers · 2026

    Clinical Research Center (CRC), Medical Pathology Center (MPC), Cancer Early Detection and Treatment Center (CEDTC) and Translational Medicine Research Center (TMRC), Chongqing University Three Gorges Hospital, Chongqing University, Wanzhou District, Chongqing 404100, China; Chongqing Technical Innovation Center for Quality Evaluation and Identification of Authentic Medicinal Herbs, Wanzhou District, Chongqing 404100, China; School of Medicine Chongqing University, Chongqing University, Shapingba District, Chongqing 400030, China.

    Papers in Europe PMC
  7. 07
    Yin M7 papers · 2026

    Clinical Research Center (CRC), Medical Pathology Center (MPC), Cancer Early Detection and Treatment Center (CEDTC) and Translational Medicine Research Center (TMRC), Chongqing University Three Gorges Hospital, Chongqing University, Wanzhou District, Chongqing 404100, China; Chongqing Technical Innovation Center for Quality Evaluation and Identification of Authentic Medicinal Herbs, Wanzhou District, Chongqing 404100, China; School of Medicine Chongqing University, Chongqing University, Shapingba District, Chongqing 400030, China. Electronic address: yinmingzhu2008@126.com.

    Papers in Europe PMC
  8. 08
    Agaimy A6 papers · 2026

    Comprehensive Cancer Center (CCC) Erlangen-EMN, Institute of Pathology, University Hospital, Friedrich-Alexander University Erlangen-Nürnberg (FAU), Erlangen, Germany.

    Papers in Europe PMC
  9. 09
    Lauer UM6 papers · 2026

    Department of Internal Medicine VIII, Medical Oncology and Pneumology, University of Tuebingen, Tuebingen, Germany. German Cancer Consortium (DKTK), German Cancer Research Center (DKFZ), Partner Site Tuebingen, Tuebingen, Germany.

    Papers in Europe PMC
  10. 10
    Li Y6 papers · 2026

    Department of Pathology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China.

    Papers in Europe PMC

Clinical research

Is a treatment being tested?

11

interventional trials for this specific condition

11 interventional trials matched this specific condition name; 5 currently recruiting in our sample.

Data as of 27 July 2026

11 interventional trials — more than 73% of diseases in the trials denominator have none at all (5114 of 7003; this disease is at the 92.1th percentile).

low confidence · 92.1th percentile (trials denominator)

Recruiting interventional trials

From the matched ClinicalTrials.gov set

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

Observational and natural-history studies

4 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

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.

"NUT midline carcinoma" OR "Midline carcinoma of children and Young adults with NUT rearrangement" OR "Midline carcinoma of the children and Young adults with NUT rearrangement" OR "NUT carcinoma" OR "carcinoma with t(15;19)(q13;p13.1) translocation" OR "nuclear protein in testis midline carcinoma"

Run this search on Europe PMC

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

"NUT midline carcinoma" OR "Midline carcinoma of children and Young adults with NUT rearrangement" OR "Midline carcinoma of the children and Young adults with NUT rearrangement" OR "NUT carcinoma" OR "carcinoma with t(15;19)(q13;p13.1) translocation" OR "nuclear protein in testis midline carcinoma"

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: 11 interventional · 4 observational · 1 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: NMC

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
  • Publication count (1548) is implausibly high for prevalence class "<1 / 1 000 000" — treat as possible over-matching, not a measure of research intensity

Ingested 2026-07-27T16:25:22.921Z