RESEARCHERS AND CLINICIANS

NUT Carcinoma is rare, but momentum is building. Whether you’re treating a patient, running a study, or exploring the molecular mechanisms behind this disease, the NUT Carcinoma Alliance exists to support and connect your efforts.

Researchers
Clinicians

For Researchers

Access to Data and Biospecimens

The International NUT Carcinoma Registry is a growing hub of de-identified patient data and tissue samples. Researchers can use this resource to:

  • Analyze clinical patterns and genomic drivers
  • Test preclinical hypotheses
  • Contribute findings to a centralized, collaborative community
Visit the Registry

Collaborate with Us

Our Scientific Advisory Council includes oncologists, pathologists, molecular biologists, and immunologists from leading institutions. We welcome collaboration on:

Meet Our Advisors
Contact Us

Trial Development Support

If you’re developing or expanding a trial:

  • We can connect you with clinicians treating NUT carcinoma patients
  • Help identify suitable candidates
  • Share de-identified registry insights
  • Let us know how we can help move your work forward
Contact Us

Clinical Trial Landscape

Because standard treatments are lacking, clinical trials are a lifeline in NUT carcinoma research.

Visit the Clinical Trails website for details and the latest updates.

Clinicaltrials.gov Listing

Explore Funding Pathways

Private foundations and donor networks often fund promising high-risk, high-reward projects.

If you’re working on a concept with translational potential, we can help identify opportunities.

Contact Us

For Clinicians

You may never have seen a NUT carcinoma case before. That’s okay.

You don’t have to do this alone.

This diagnosis is rare and can feel overwhelming—for both patients and providers. But connecting to specialists and research resources can make a big difference in the care you provide.

How We Support You

If you’re treating a patient with suspected or confirmed NUT carcinoma, we can assist with:

  • Diagnostic consultation from pathologists experienced in NUTM1 fusion testing
  • Treatment guidance, including clinical trial eligibility and emerging options
  • Registry access to contribute your patient’s case to ongoing research
    Specialist referral or case discussion for complex decisions
  • Family resources to help your patient navigate support and next steps

Join a Collaborative Network

Whether you’re treating locally or coordinating with a major center, your role is essential. The NUT Carcinoma Alliance is here to support you—because together, we can deliver more informed, compassionate care.

Need help or a second opinion?

Contact Our Clinical Support Team

FAQ for Clinicians and Healthcare Professionals

Diagnostic Support
What is the best way to confirm a diagnosis of NUT carcinoma?

If IHC is positive, molecular testing to detect a NUTM1 gene fusion—such as NUT FISH, RNA sequencing—is recommended.

NUT carcinoma can affect individuals of any age, but it is most commonly diagnosed in adolescents and young adults (ages 10–39). It has also been identified in pediatric and older adult populations.

How can I submit a tissue sample for research?

We partner with Pattern.org, a nonprofit that coordinates the donation of tumor tissue for research purposes. With patient consent, Pattern.org works directly with your pathology department to collect excess tissue and ship it to researchers, including those at the International NUT Carcinoma Registry.

No. Pattern.org uses archival tissue that is no longer needed for diagnosis or clinical care. The process does not involve any extra procedures or affect the patient’s treatment plan.

Every tissue sample plays a vital role in helping researchers study tumor biology, identify therapeutic targets, and accelerate drug development for NUT carcinoma. Contributions support collective progress toward more effective treatments.

Visit Pattern.org and select NUT carcinoma to begin the process. Instructions are provided for coordinating with your institution’s pathology department. If you need assistance, reach out to us and we’ll guide you through it.

Where can I refer a patient for expert consultation or second opinion?

We work closely with specialists at institutions experienced in NUT carcinoma, including Dana-Farber Cancer Institute and the University of North Carolina. We can facilitate referrals or help arrange a virtual case review.

No standard of care currently exists. Most treatment decisions are individualized based on tumor site, disease progression, and access to clinical trials. We can help identify trial options and connect you with clinicians experienced in managing this rare cancer.

Patients can consent to share their clinical data and medical history with the Registry. We’ll provide the forms and walk you through the process of submitting data securely and in accordance with privacy guidelines.

Are there any current clinical trials for NUT carcinoma?

Yes. Dana-Farber Cancer Institute is leading a Phase 1/2 clinical trial testing the BET inhibitor ZEN003694 in combination with standard chemotherapy (etoposide/cisplatin) or the CDK4/6 inhibitor abemaciclib. The trial is open to patients ages 12 and up.

ClinicalTrials.gov Listing

Yes. If you’re interested in developing or expanding a clinical trial, we can help connect you with other investigators, clinicians, and families. Our network also provides access to de-identified data and tissue resources to support your research.

We work with private foundations and donors who support high-impact, early-phase research. If you’re working on a project relevant to NUT carcinoma, we’d love to hear about it and help explore funding possibilities.

Contact Us
How quickly can I get support for a suspected or confirmed case?

If you need help reviewing a case, identifying next steps, or navigating resources, we aim to respond within 24–48 hours.

Connect With Our Clinical Support Team