Approximately 150 cases of cancer per one million per year are considered rare cancers. While all tumors originate from genetic changes, a small percentage of these tumors are familial. Researchers want to study these changes in biological samples from people with rare tumors in order to learn more about how these tumors develop. The information obtained from this study may lead to improved screening, preventive guidelines, and treatments.
To better understand rare cancers and hereditary cancer syndromes.
People who have a rare tumor, a family history of a rare tumor, a hereditary cancer syndrome, or a mutation that leads to rare tumors.
Participants will be screened with questions about their medical history and/or that of their family members. They will give a saliva sample.
Participants who have a tumor will have their medical records and tests reviewed. They will answer questions about their wellbeing and needs. They may provide a tumor tissue sample.
Participants may also have:
Participants will be contacted once a year. They will answer updated questions about their medical and family history.
Participants will be asked to contact the study team if there are changes in their tumors.
Participants may be invited to join focus groups for people with the same diagnosis of rare tumors.
Participants may be invited to participate in other NIH protocols.
development of groundbreaking interventional trials in patients with plexiform neurofibromas. The Pediatric and Wild-Type Gastrointestinal Stromal Tumor (GIST) Clinic not only provided the background for discovery of the molecular features of a very
rare disease such as succinate dehydrogenase deficient GIST, but also was able identify therapeutic strategies for this group of patients (for example, avoidance of unnecessarily aggressive surgery). Similarly, studies in adults at the CCR have tremendously advanced the understanding of rare solid tumors occurring primarily in adults such as thymoma, renal cell cancer, and endocrine tumors. The DCEG has made groundbreaking discoveries in large scale long-term longitudinal cohort studies of Li-Fraumeni syndrome, inherited bone marrow failure syndromes, familial melanoma, DICER1-syndrome, and others. We hypothesize that by combining the distinct expertise of DCEG and CCR investigators to jointly study very rare tumors the understanding of the etiology and natural history of these tumors and the development effective prevention strategies and therapies will accelerate.
|Clinical Study Identifier||NCT03739827|
|Sponsor||National Cancer Institute (NCI)|
|Last Modified on||26 November 2020|
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