Overview
NUT midline carcinoma (NMC), also called NUT carcinoma or nuclear protein in testis midline carcinoma, is a very rare and aggressive type of cancer. It is caused by a specific change in the NUT gene (also known as NUTM1), which leads to the growth of cancer cells that do not mature or develop normally. These cancer cells tend to grow very quickly and spread to nearby tissues. Despite the name 'midline,' this cancer can appear in many parts of the body, though it most often starts in the head, neck, or chest area — particularly the throat, windpipe, or lungs. It can also occur in other locations like the abdomen. Because NUT carcinoma grows so fast, symptoms often appear suddenly and worsen quickly. Common signs include a lump or mass in the neck or chest, difficulty breathing or swallowing, and pain in the affected area. The cancer can spread to lymph nodes and other organs early in its course. Treatment typically involves a combination of surgery, radiation therapy, and chemotherapy. Newer targeted therapies, especially drugs called BET bromodomain inhibitors, are being studied in clinical trials and show some promise. However, NUT carcinoma remains very difficult to treat, and outcomes are often poor despite aggressive therapy. Early and accurate diagnosis is critical to give patients the best possible chance.
Also known as:
Key symptoms:
A lump or mass in the neck, chest, or throatDifficulty breathing or shortness of breathDifficulty swallowingPersistent coughChest pain or pressureHoarse or changed voiceUnexplained weight lossFatigue and weaknessSwollen lymph nodesNasal congestion or blockageNosebleedsFever without a clear cause
Clinical phenotype terms (9)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
5 eventsNorthwestern University — PHASE2
National Cancer Institute (NCI) — PHASE1
Three Gorges Hospital of Chongqing University
Dana-Farber Cancer Institute
National Cancer Institute (NCI) — PHASE1, PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for NUT midline carcinoma.
5 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to NUT midline carcinoma.
Community
No community posts yet. Be the first to share your experience with NUT midline carcinoma.
Start the conversation →Latest news about NUT midline carcinoma
Disease timeline:
New recruiting trial: Testing the Safety and Efficacy of the Combination of Two Anti-cancer Drugs, ZEN003694 and Abemaciclib, for Adult and Pediatric Patients (12-17 Years) With Metastatic or Unresectable NUT Carcinoma, Breast Cancer and Other Solid Tumors
A new clinical trial is recruiting patients for NUT midline carcinoma
New recruiting trial: Biology of Young Lung Cancer Study: The YOUNG LUNG Study
A new clinical trial is recruiting patients for NUT midline carcinoma
New recruiting trial: Testing the Safety and Efficacy of the Addition of a New Anti-cancer Drug, ZEN003694, to Chemotherapy Treatment (Cisplatin and Etoposide or Carboplatin and Paclitaxel) for Adult and Pediatric Patients (12-17 Years) With NUT Carcinoma
A new clinical trial is recruiting patients for NUT midline carcinoma
New recruiting trial: Cemiplimab for the Treatment of Incurable Metastatic or Unresectable NUT Carcinoma
A new clinical trial is recruiting patients for NUT midline carcinoma
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What specific gene fusion was found in my tumor, and does it affect my treatment options?,Are there any clinical trials for NUT carcinoma that I might be eligible for?,What is the goal of the treatment plan — to cure the cancer or to control it and manage symptoms?,Should I be seen at a specialized cancer center with experience in NUT carcinoma?,What are the most important warning signs that my condition is getting worse and when should I go to the emergency room?,How will treatment affect my ability to eat, breathe, and carry out daily activities?,Is palliative care or a supportive care team available to help manage my symptoms and quality of life?
Common questions about NUT midline carcinoma
What is NUT midline carcinoma?
NUT midline carcinoma (NMC), also called NUT carcinoma or nuclear protein in testis midline carcinoma, is a very rare and aggressive type of cancer. It is caused by a specific change in the NUT gene (also known as NUTM1), which leads to the growth of cancer cells that do not mature or develop normally. These cancer cells tend to grow very quickly and spread to nearby tissues. Despite the name 'midline,' this cancer can appear in many parts of the body, though it most often starts in the head, neck, or chest area — particularly the throat, windpipe, or lungs. It can also occur in other location
How is NUT midline carcinoma inherited?
NUT midline carcinoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for NUT midline carcinoma?
Yes — 5 recruiting clinical trials are currently listed for NUT midline carcinoma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat NUT midline carcinoma?
8 specialists and care centers treating NUT midline carcinoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.