NATURAL HISTORY STUDY

Natural History Study of Rare Solid Tumors

Natural history studies compile information from a large number of patients to better understand the “history” of a disease over a long period of time. This study will provide us with a comprehensive, detailed understanding of the natural course of myoepithelial carcinoma (MEC) from the time it forms, to when it first causes symptoms, and through every clinical stage after that.

We are excited to announce that researchers with the My Pediatric and Adult Rare Tumor (MyPART) Network at the National Cancer Institute (NCI) are currently enrolling MEC patients in the Natural History Study of Rare Solid Tumors. Clinical and biological information collected by the study, including tumor tissue samples, will provide a better understanding of how chordomas develop and grow, and how we can more effectively treat them.

What Is a Natural History Study?

A natural history study tracks the course of a disease over time, collecting detailed information about how it affects people at different stages. For rare tumors like MEC, where little data exists, these studies are crucial to help researchers and clinicians:

  • Understand how the disease develops and changes

  • Identify potential risk factors and genetic markers

  • Inform future treatment options and clinical trials

  • Lay the groundwork for new therapies and better outcomes

Why This Matters for the MEC Community

People diagnosed with MEC often face uncertainty due to limited research and no proven treatment options. By participating in the Natural History Study, patients contribute valuable information that can accelerate discoveries, guide care, and bring us closer to effective, targeted therapies.

Who Can Participate?

MEC patients and survivors anywhere in the world and at any stage of treatment — before, during, or after — are able to enroll. The study is open to both children and adults, regardless of where they receive treatment. Because this is an informational study and not a treatment study, participants are not required to visit the National Institutes of Health (NIH) Clinical Center in person.

Participation is voluntary and comes at no cost to families — and travel support may be available.

Learn More & Get Involved

To find out more about the NIH Natural History Study of Rare Solid Tumors — including eligibility and how to enroll — visit the NIH study page.


If you’d like help connecting with the study team or have questions, please contact us — we’re here for you.

Together, we can build the knowledge needed to find better answers — and, ultimately, cures — for MEC.

Our Commitment

At cureMEC, we are proud to partner with the National Institutes of Health (NIH) to advance knowledge of rare cancers like myoepithelial carcinoma (MEC). As part of this effort, cureMEC is dedicated to supporting families every step of the way. We work closely with the NIH and other advocacy partners to:

  • Raise awareness about this important study

  • Connect patients and families with enrollment opportunities

  • Ensure our community’s voice helps shape research priorities


By working together, we can drive progress for everyone affected by MEC and other rare cancers.