[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100342530":3},{"organization":4,"armGroups":7,"interventions":10,"overallOfficials":21,"centralContacts":26,"locations":35,"responsibleParty":85,"collaborators":10,"id":87,"slug":88,"hasResults":89,"nctId":90,"briefTitle":91,"officialTitle":92,"acronym":10,"eligibilityCriteria":93,"healthyVolunteers":94,"sex":95,"minAge":96,"maxAge":10,"enrollmentInfo":97,"targetDuration":10,"studyType":100,"phases":10,"briefSummary":101,"conditions":102,"keywords":108,"overallStatus":38,"whyStopped":10,"lastUpdateSubmitDate":113,"lastUpdatePostDateStruct":114,"startDateStruct":117,"completionDateStruct":119,"leadSponsor":121,"locationsCount":122},{"fullName":5,"class":6},"National Institutes of Health Clinical Center (CC)","NIH",[8,12,15,18],{"label":9,"type":10,"description":11,"interventionNames":10},"1\u002FCohort 1",null,"Subjects with a diagnosis of rare tumor (fewer than 15 cases in 100,000 people per year)",{"label":13,"type":10,"description":14,"interventionNames":10},"2\u002FCohort 2","Relatives of subjects with a rare tumor who have a germline genetic variant that predispose to a rare solid tumor or a subject who has a germline genetic variant that predispose to a rare solid tumor",{"label":16,"type":10,"description":17,"interventionNames":10},"3\u002FCohort 3","Relatives of subjects with a diagnosis of rare tumor that do NOT have known germline genetic variants that predispose to a rare solid tumor.",{"label":19,"type":10,"description":20,"interventionNames":10},"4\u002F Cohort 4","Parents\u002Fguardians of children with a diagnosis of rare tumor participating in focus groups (if not enrolled in Cohorts 1, 2 or 3)",[22],{"name":23,"affiliation":24,"role":25},"Mary F Wedekind Malone, D.O.","National Cancer Institute (NCI)","PRINCIPAL_INVESTIGATOR",[27,32],{"name":28,"role":29,"phone":30,"phoneExt":10,"email":31},"Barbara J Thomas, R.N.","CONTACT","(240) 858-3633","barbara.thomas2@nih.gov",{"name":23,"role":29,"phone":33,"phoneExt":10,"email":34},"(240) 858-3765","maryfrances.wedekindmalone@nih.gov",[36,55,70],{"facility":37,"status":38,"city":39,"state":40,"zip":41,"country":42,"countryCode":43,"cosmosGeoPoint":44,"geoPoint":49,"contacts":50},"National Institutes of Health Clinical Center","RECRUITING","Bethesda","Maryland","20892","United States","US",{"type":45,"coordinates":46},"Point",[47,48],-77.10026,38.98067,{"lat":48,"lon":47},[51],{"name":52,"role":29,"phone":53,"phoneExt":10,"email":54},"National Cancer Institute Referral Office","888-624-1937","ncimo_referrals@mail.nih.gov",{"facility":56,"status":38,"city":57,"state":58,"zip":59,"country":42,"countryCode":43,"cosmosGeoPoint":60,"geoPoint":64,"contacts":65},"Oregon Health and Science University","Portland","Oregon","97239",{"type":45,"coordinates":61},[62,63],-122.67621,45.52345,{"lat":63,"lon":62},[66],{"name":67,"role":29,"phone":68,"phoneExt":10,"email":69},"Takumi Suzuki","503-494-3621","suzukit@ohsu.edu",{"facility":71,"status":38,"city":72,"state":73,"zip":74,"country":42,"countryCode":43,"cosmosGeoPoint":75,"geoPoint":79,"contacts":80},"Texas Children's Hospital","Houston","Texas","77030",{"type":45,"coordinates":76},[77,78],-95.36327,29.76328,{"lat":78,"lon":77},[81],{"name":82,"role":29,"phone":83,"phoneExt":10,"email":84},"Gaylon Stevenson","(713) 798-495_","gnsteve1@texaschildrens.org",{"type":86,"investigatorFullName":10,"investigatorTitle":10,"investigatorAffiliation":10,"oldNameTitle":10,"oldOrganization":10},"SPONSOR","100342530","natural-history-and-biospecimen-acquisition-for-children-and-adults-with-rare-solid-tumors-100342530",false,"NCT03739827","Natural History and Biospecimen Acquisition for Children and Adults With Rare Solid Tumors","Natural History and Biospecimen Acquisition Study for Children and Adults With Rare Solid Tumors","* INCLUSION CRITERIA:\n* Cohort 1: Participants with a diagnosis of a rare solid tumor (fewer than 15 cases in 100,000 people per year). There are no age restrictions beyond the neonatal period (4 weeks).\n\nOR\n\n-Cohort 2: Participants without a rare tumor who have a germline genetic variant that predisposes to a rare solid tumor\n\nOR\n\n-Cohort 3: Relatives of participants with diagnosis of rare solid tumors who do NOT have a known germline variant that predisposes to a rare solid tumor\n\nOR\n\n* Cohort 4: Parent\u002Fguardian of child participating in a focus group if not already enrolled on the study.\n* Ability of subject or Legally Authorized Representative (LAR) to understand and the willingness to sign a written informed consent document.\n\nEXCLUSION CRITERIA:\n\nNone",true,"ALL","4 Weeks",{"count":98,"type":99},10000,"ESTIMATED","OBSERVATIONAL","Background:\n\nApproximately 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.\n\nObjective:\n\nTo better understand rare cancers and hereditary cancer syndromes.\n\nEligibility:\n\nPeople who have a rare tumor, a family history of a rare tumor, a hereditary cancer syndrome, or a mutation that leads to rare tumors.\n\nDesign:\n\nParticipants will be screened with questions about their medical history and\u002For that of their family members. They will give a saliva sample.\n\nParticipants 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.\n\nParticipants may also have:\n\n* Physical exam\n* Clinical photography\n* Blood, urine, saliva, and stool samples taken\n* Consultation with specialists\n* 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.\n* Genetic testing\u002Fgenetic counseling.\n\nParticipants will be contacted once a year. They will answer updated questions about their medical and family history.\n\nParticipants will be asked to contact the study team if there are changes in their tumors.\n\nParticipants may be invited to join focus groups for people with the same diagnosis of rare tumors.\n\nParticipants may be invited to participate in other NIH protocols.\n\n\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\n\n\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\n\nRARE TUMOR LIST:\n\n1. Acinar cell carcinoma of the pancreas\n2. Adamantinoma\n3. Adenosqaumous carcinoma of the pancreas\n4. Adrenocortical carcinoma\n5. Alveolar soft part sarcoma\n6. Anaplastic Thyroid Cancer\n7. Angiosarcoma\n8. Atypical Teratoid Rhabdoid Tumor\u002FMRT\n9. Carcinoid\n10. Carcinoma of Unknown Primary\n11. Chondrosarcoma\n12. Chondromyxoid fibroma\n13. Chordoma\n14. Clear cell renal carcinoma\n15. Clear Cell Sarcoma\n16. Clear cell sarcoma of kidney\n17. Conventional chordoma\n18. Dedifferentiated chordoma\n19. Desmoid\n20. Desmoplastic small round cell tumor\n21. Epithelioid hemangioendothelioma\n22. Esthenioneuroblastoma\n23. Ewing Sarcoma\n24. Fibrolamellar carcinoma\n25. Fusion negative rhabdomyosarcoma\n26. Fusion positive renal cell carcinoma\n27. Fusion positive rhabdomyosarcoma\n28. Gastro-enteropancreatic neuroendocrine tumor\n29. Hepatoblastoma\n30. Hereditary Diffuse Gastric Cancer\n31. Inflammatory myofibroblastic tumor\n32. Kaposiform hemangioendothelioma\n33. Malignant ectomesenchymal tumor\n34. Malignant peripheral nerve sheath tumor\n35. Malignant triton tumor\n36. Medullary thyroid cancer\n37. Mixed acinar adenocarcinoma\n38. Mixed acinar neuroendocrine carcinoma\n39. Myxoid Liposarcoma\n40. Neuroblastoma\n41. Neuroendocrine tumors\n42. NUT midline carcinoma\n43. Osteosarcoma\n44. Pancreas ductal adenocarcinoma with squamous features\n45. Pancreatic acinar cell carcinoma\n46. Papillary renal cell carcinoma\n47. Paraganglioma\n48. Parosteal Osteosarcoma\n49. Periosteal Osteosarcoma\n50. Peripheral nerve sheath tumor\n51. Peripheral primitive neuroectodermal tumor\n52. Pheochromocytoma\n53. Pituitary cancer\n54. Poorly differentiated chordoma\n55. Renal medullary carcinoma\n56. Rhabdomyosarcoma\n57. Round cell Liposarcoma\n58. Schwannoma\n59. Sclerosing Epithelioid Fibrosarcoma\n60. SDH deficient GIST\n61. SMARCB1 deficient tumors\n62. SMARCA4 deficient tumors\n63. Synovial sarcoma\n64. Undifferentiated Sarcoma\n\n    \\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\n\n    \\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*\\*",[103,104,105,106,107],"Malignant Solid Tumors","Other Neoplasms Solid Tumors","Pediatric Solid Tumor","Refractory Solid Tumors","Solid Tumor",[109,110,111,112],"Service to the Patients","Knowledge about the Nature of Cancer","Cancer Evaluations","Natural History","2026-06-23",{"date":115,"type":116},"2026-06-24","ACTUAL",{"date":118,"type":116},"2019-01-28",{"date":120,"type":99},"2032-03-31",{"name":24,"class":6},3]