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My Pediatric and Adult Rare Tumor (MyPART) Natural History Study of Rare Solid Tumors
dbGaP
Data Resource:  dbGaP
Point of Contact:  
Mary Frances Wedekind, DO,  
Project

About This Dataset
The goal of this study is to comprehensively and longitudinally evaluate the natural history of patients with rare solid tumors or tumor predisposition syndromes, estimating and defining their clinical spectrum (e.g. disease course and survival). Clinical data, patient reported outcomes (PROs), and biospecimen associated data are collected. Clinical data includes response to treatment, tumor pathology, and imaging. PROs include measures of pain, depression, anxiety, mobility, and cognitive functioning. Biospecimen data includes next-generation sequencing [RNAseq, whole exome sequencing (WES), whole genome sequencing (WGS), EPIC methylation array data, and TruSight Oncology 500 gene panel sequencing], cytokine analysis of plasma, immune phenotyping of circulating peripheral blood mononuclear cells.
Core Data Elements
Number of Cases
522
Case Sex
Female (320); Male (202)
Case Age At Diagnosis
0 to 4 years (13); 5 to 9 years (18); 10 to 14 years (21); 15 to 19 years (38); 20 to 24 years (19); 25 to 29 years (21); 30 to 34 years (35); 35 to 39 years (39); Greater than 39 years (293)
Case Race
American Indian or Alaska Native (5); Asian (20); Black or African American (19); More Than One Race (12); Native Hawaiian or Other Pacific Islander (1); Other (10); White (390); Unknown (40)
Case Ethnicity
Hispanic or Latino (49); Not Hispanic or Latino (389); Unknown (59)
Case Disease Diagnosis
Adenocarcinoma (1); Adrenocortical Carcinoma (119); Alveolar Soft Part Sarcoma (7); Anaplastic Large Cell Lymphoma (1); Atypical Carcinoid Tumor (1); Atypical Myofibroblastic Neoplasm (4); Carcinoid (16); Cardiac Intimal Sarcoma (4); Chordoma (45); Chordoma -- Poorly Differentiated (4); Conventional Chordoma (6); Diffuse Idiopathic Pulmonary Neuroendocrine Tumor (1); Epithelioid Hemangioendothelioma (9); Gastrointestinal Stromal Tumor (52); Inflammatory Myofibroblastic Tumor (4); Leiomyosarcoma (1); Lung Neuroendocrine Carcinoma (1); Malignant Glomus Tumor (1); Malignant Melanotic Schwannoma (1); Medullary Thyroid Cancer (17); Medullary Thyroid Carcinoma (7); Metastatic Poorly Differentiated Carcinoma (1); Mixed Adenoneuroendocrine Carcinoma (1); Mucinous Adenocarcinoma (7); Myxofibrosarcoma (6); Neuroendocrine Carcinoma (1); Neuroendocrine Neoplasm (4); Neuroendocrine Tumor (30); No Tumor (1); Osteosarcoma (7); Other (23); Pancreatic Neuroendocrine Tumor (6); Papillary Thyroid Carcinoma (9); Paraganglioma (1); Parathyroid Carcinoma (10); Pheochromocytoma (7); Poorly Differentiated Adenocarcinoma (4); Schwannoma (1); SDH Deficient Gastrointestinal Stromal Tumor (16); Solitary Fibrous Tumor (4); Tenosynovial Giant Cell Tumor (1); Tubular Adenoma (1); Uterine Leiomyosarcoma (1); Well Differentiated Neuroendocrine Tumor (37); Well Differentiated Pancreatic Neuroendocrine Tumor (4)
Case Tumor Site
Abdomen (99); Back (1); Chest (8); Head (12); Neck (20); Pelvis (1); Right Upper Leg (1); Upper Arm (1); Various (2); Not Reported (6)
Number of Samples
192
Sample Analyte Type
DNA (170); RNA (22)
Sample Is Normal
Yes (25); No (167)
Additional Data Elements
CLINICAL TRIAL IDENTIFIER
DBGAP STUDY IDENTIFIER
Charts
Female (320); Male (202)
320Female