Natural History Study of Children and Adults With Neuroendocrine Neoplasms (NEN)s

Study Summary

Background: Neuroendocrine neoplasms (NENs) are rare tumors that originate in neuroendocrine cells. NENs can affect almost any part of the body. People with low-grade tumors can live many years. But high-grade tumors can be very aggressive. Researchers want to learn more about this type of cancer. This may help them design better treatments and supportive care studies. Objective: To gain a better understanding of neuroendocrine neoplasms. Eligibility: People starting at age 3 and older who have or are suspected of having NENs and are enrolled in protocol 19C0016, Natural History and Biospecimen Acquisition Study for Children and Adults with Rare Solid Tumors Design: Participants will be screened with questions about their medical history. This may be done over the telephone or in person. Participants medical records, test results, and imaging results will be reviewed. They may have scans and blood tests. They may sign a separate consent form for some of the tests. Participants will complete paper or electronic surveys. The surveys will ask about the effects of cancer on their wellbeing. Participants may give samples of their tumors from previous surgeries or biopsies. These samples will be used to study their tumor genes. Participants will get advice on how to manage their NENs. They will also get recommendations about potential treatment options. Participants home doctors will be contacted every 6 to 12 months. They will give medical data such as imaging and test results. Participants may have follow-up visits at NIH every 6 to 12 months. Participants will contact researchers if there are any changes in their tumor. Participants will be followed on this study for life.