Natural History Study of Rare Solid Tumors

You can help improve treatment options for Sclerosing Epithelioid Fibrosarcoma (SEF)

Researchers at the U.S. National Cancer Institute (NCI) are currently enrolling SEF patients in the Natural History Study of Rare Solid Tumors. Clinical and biological information collected in the study, including tumor tissue samples, will provide a better understanding of how SEF develops and grows and how we can more effectively treat these 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 SEF from the time it forms, to when it first causes symptoms, and through every clinical stage after that.

Why this study is important

Knowledge of the natural history of SEF is critical to the process of getting treatments approved for SEF. Researchers will use data from this natural history study to gain new insights into the biology of SEF and develop treatments that are more tailored to SEF and other rare solid tumors. Additionally, we must be able to demonstrate that new treatments change the natural history of SEF in order for them to be approved — having this baseline data will make it possible to meaningfully assess the effect of new treatments in clinical trials.

Who can participate

SEF patients and survivors anywhere in the world and at any stage of treatment — before, during, or after — are able to enroll. 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. Pediatric patients over the age of 1 year can be enrolled in the study by their parent or guardian.

How the study works

Once you send an initial email to the study team to learn more about the study, they aim to respond to you within 24-48 hours. As with all clinical studies, there is a screening process you must go through before you enroll. The team at NCI will collect certain medical records, provide you with more information about the study, answer any questions you may have, and then inform you of your rights as a study participant (informed consent). 

How can I get more information or join the study?

For specific questions about our Natural History Study of Rare Solid Tumors, email NCICCRRareTumorClinic@mail.nih.gov. You can also see their Contact Us page for other ways to find out information or join to a clinical trial.

Eligibility criteria and other details are available in the study’s protocol summary.

Related Resources

• Natural History Study FAQs Updated pdf file (92 KB)