Background:
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.
Objective:
To better understand rare cancers and hereditary cancer syndromes.
Eligibility:
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.
Design:
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:
- Physical exam
- Clinical photography
- Blood, urine, saliva, and stool samples taken
- Consultation with specialists
- A scan that produces a picture of the body. Either one that uses a small amount of radiation, or one that uses a magnetic field.
- Genetic testing/genetic counseling.
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.
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RARE TUMOR LIST:
1. Acinar cell carcinoma of the pancreas
2. Adamantinoma
3. Adenosqaumous carcinoma of the pancreas
4. Adrenocortical carcinoma
5. Alveolar soft part sarcoma
6. Anaplastic Thyroid Cancer
7. Angiosarcoma
8. Atypical Teratoid Rhabdoid Tumor/MRT
9. Carcinoid
10. Carcinoma of Unknown Primary
11. Chondrosarcoma
12. Chondromyxoid fibroma
13. Chordoma
14. Clear cell renal carcinoma
15. Clear Cell Sarcoma
16. Clear cell sarcoma of kidney
17. Conventional chordoma
18. Dedifferentiated chordoma
19. Desmoid
20. Desmoplastic small round cell tumor
21. Epithelioid hemangioendothelioma
22. Esthenioneuroblastoma
23. Ewing Sarcoma
24. Fibrolamellar carcinoma
25. Fusion negative rhabdomyosarcoma
26. Fusion positive renal cell carcinoma
27. Fusion positive rhabdomyosarcoma
28. Gastro-enteropancreatic neuroendocrine tumor
29. Hepatoblastoma
30. Hereditary Diffuse Gastric Cancer
31. Inflammatory myofibroblastic tumor
32. Kaposiform hemangioendothelioma
33. Malignant ectomesenchymal tumor
34. Malignant peripheral nerve sheath tumor
35. Malignant triton tumor
36. Medullary thyroid cancer
37. Mixed acinar adenocarcinoma
38. Mixed acinar neuroendocrine carcinoma
39. Myxoid Liposarcoma
40. Neuroblastoma
41. Neuroendocrine tumors
42. NUT midline carcinoma
43. Osteosarcoma
44. Pancreas ductal adenocarcinoma with squamous features
45. Pancreatic acinar cell carcinoma
46. Papillary renal cell carcinoma
47. Paraganglioma
48. Parosteal Osteosarcoma
49. Periosteal Osteosarcoma
50. Peripheral nerve sheath tumor
51. Peripheral primitive neuroectodermal tumor
52. Pheochromocytoma
53. Pituitary cancer
54. Poorly differentiated chordoma
55. Renal medullary carcinoma
56. Rhabdomyosarcoma
57. Round cell Liposarcoma
58. Schwannoma
59. Sclerosing Epithelioid Fibrosarcoma
60. SDH deficient GIST
61. SMARCB1 deficient tumors
62. SMARCA4 deficient tumors
63. Synovial sarcoma
64. Undifferentiated Sarcoma
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