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1 Supplementary Table 1 trials currently open for patients with pheochromocytoma and/or paraganglima (from trials.gov) Active PPGL trials Status Of Sunitinib In Patients With Recurrent Paraganglioma/Pheochromocytoma Paraganglioma; Pheochromocytoma Drug: Sunitinib Phase 2 Endpoint Classification: Efficacy ; Intervention Model: Single Group NCT December I-MIBG Therapy for Refractory Neuroblastoma and Metastatic Paraganglioma/Pheochromocytoma Neuroblastoma; Childhood Metastatic Pheochromocytoma; Paraganglioma Drug: 131 I-Metaiodobenzylguanidine (131 I-MIBG); Drug: 131 I-MIBG NCT July 2015 Protocol Using 131I-MIBG Therapy for Refractory Neuroblastoma, Pheochromocytoma, or Paraganglioma Neuroblastoma; Pheochromocytoma; Paraganglioma Radiation: I-131 MIBG NCT
2 First International Randomized in Malignant Progressive Pheochromocytoma and Paraganglioma Malignant Progressive Pheochromocytoma and Paraganglioma (PPGL) Drug: Sunitinib; Drug: Placebo Phase 2 Allocation: Randomized; Endpoint Classification: Efficacy ; Intervention Model: Parallel Assignment; Masking: Double Blind (Subject, Caregiver, Investigator, Outcomes Assessor); Primary Purpose: Treatment NCT Compassionate Use of 131I-MIBG for Patients With Malignant Pheochromocytoma Pheochromocytoma; Paraganglioma Drug: 131 I-Metaiodobenzylguanidine (131 I-MIBG) NCT August 2021 Protocol Using I131-MIBG Neuroblastoma; Pheochromocytoma; Paraganglioma Radiation: I-131 MIBG
3 NCT Cabozantinib for Malignant Pheochromocytoma Neuroendocrine Tumors Drug: Cabozantinib; Behavioral: Questionnaire Endpoint Classification: Safety/Efficacy ; Intervention Model: Single Group Assignment; Masking: Open Label; Primary Purpose: Treatment NCT F-FDOPA PET in Neuroendocrine Tumours Thyroid Cancer, Medullary; Carcinoid Tumor; Pheochromocytoma; Paraganglioma; Insulinoma; Neuroblastoma Drug: [18 F]-6-L-fluorodihydroxyphenylalanine (18F-FDOPA) NCT August 2018 Unknown 123I-MIBG Scintigraphy in Patients Being Evaluated for Neuroendocrine Tumors Pheochromocytoma; Neuroblastoma; Paraganglioma; Medullary Thyroid Carcinoma; Carcinoid Tumors Drug: 123I-meta-iodobenzylguanidine
4 Phase 3 Primary Purpose: Diagnostic NCT Iodine I 131 Metaiodobenzylguanidine in Treating Patients With Recurrent, Progressive, or Refractory Neuroblastoma or Malignant Pheochromocytoma or Paraganglioma Neuroblastoma; Pheochromocytoma Radiation: iobenguane I 131 Phase 2 Endpoint Classification: Safety/Efficacy ; Intervention Model: Single Group NCT May 2017 Not yet recruiting Nivolumab and Ipilimumab in Treating Patients With Rare Tumors Acinar Cell Carcinoma; Adrenal Cortex Carcinoma; Adrenal Gland Pheochromocytoma; Anal Canal Neuroendocrine Carcinoma; Anal Canal Undifferentiated Carcinoma; Appendix Mucinous Adenocarcinoma; Bladder Adenocarcinoma; Bronchioloalveolar Carcinoma; Cervical Adenocarcinoma; Cervical Squamous Cell Carcinoma, Not Otherwise Specified; Cholangiocarcinoma; Chordoma; Colorectal Squamous Cell Carcinoma; Endometrial Adenocarcinoma; Endometrioid Adenocarcinoma; Esophageal Neuroendocrine Carcinoma; Esophageal Undifferentiated Carcinoma; Extrahepatic Bile Duct Carcinoma; Fallopian Tube Adenocarcinoma; Fibromyxoid Tumor; Gastric Neuroendocrine Carcinoma; Gastric Squamous Cell Carcinoma; Giant Cell Carcinoma; Intestinal Neuroendocrine Carcinoma; Intrahepatic Cholangiocarcinoma; Lung Carcinoid Tumor; Lung Sarcomatoid Carcinoma; Major Salivary Gland Carcinoma; Malignant Odontogenic Neoplasm; Malignant Peripheral Nerve Sheath Tumor; Malignant Skin Neoplasm; Malignant Testicular Sex Cord-Stromal Tumor; Metastatic Malignant Neoplasm of Unknown Primary Origin; Mixed Mesodermal (Mullerian) Tumor; Mucinous Adenocarcinoma; Mucinous Cystadenocarcinoma; Nasal Cavity Adenocarcinoma; Nasal Cavity Carcinoma; Nasopharyngeal Carcinoma; Nasopharyngeal Papillary Adenocarcinoma; Nasopharyngeal Undifferentiated Carcinoma; Oral Cavity
5 Carcinoma; Oropharyngeal Undifferentiated Carcinoma; Ovarian Adenocarcinoma; Ovarian Germ Cell Tumor; Ovarian Mucinous Adenocarcinoma; Ovarian Squamous Cell Carcinoma; Pancreatic Acinar Cell Carcinoma; Pancreatic Neuroendocrine Carcinoma; Paraganglioma; Paranasal Sinus Adenocarcinoma; Paranasal Sinus Carcinoma; Parathyroid Gland Carcinoma; Pituitary Gland Carcinoma; Placental Choriocarcinoma; Placental-Site Gestational Trophoblastic Tumor; Primary Peritoneal High Grade Serous Adenocarcinoma; Pseudomyxoma Peritonei; Scrotal Squamous Cell Carcinoma; Seminal Vesicle Adenocarcinoma; Seminoma; Serous Cystadenocarcinoma; Small Intestinal Adenocarcinoma; Small Intestinal Squamous Cell Carcinoma; Spindle Cell Neoplasm; Squamous Cell Carcinoma of the Penis; Teratoma With Malignant Transformation; Testicular Non- Seminomatous Germ Cell Tumor; Thyroid Gland Carcinoma; Tracheal Carcinoma; Transitional Cell Carcinoma; Undifferentiated Gastric Carcinoma; Ureter Adenocarcinoma; Ureter Squamous Cell Carcinoma; Urethral Adenocarcinoma; Urethral Squamous Cell Carcinoma; Vaginal Adenocarcinoma; Vaginal Squamous Cell Carcinoma, Not Otherwise Specified; Vulvar Adenocarcinoma; Vulvar Squamous Cell Carcinoma Procedure: Biospecimen Collection; Biological: Ipilimumab; Biological: Nivolumab Endpoint Classification: Efficacy ; Intervention Model: Single Group Assignment ; Masking: Open Label; Primary Purpose: Treatment NCT MIBG for Refractory Neuroblastoma and Pheochromocytoma Relapsed Neuroblastoma; Metastatic Pheochromocytoma Drug: 131 I-Metaiodobenzylguanidine (131I- MIBG); Drug: Potassium iodide solution; Drug: G- CSF; Procedure: hematopoietic stem cell infusion Endpoint Classification: Safety/Efficacy ; Intervention Model: Single Group Assignment; Masking: Open Label; Primary Purpose: Treatment
6 NCT December 2018 Phenoxybenzamine Versus Doxazosin in PCC Patients Pheochromocytoma Drug: Phenoxybenzamine; Drug: Doxazosin Phase 4 Allocation: Randomized; Endpoint Classification: Efficacy ; Intervention Model NCT December 2017 Not yet recruiting Veliparib, Capecitabine, and Temozolomide in Patients With Advanced, Metastatic, and Recurrent Neuroendocrine Tumor Functional Pancreatic Neuroendocrine Tumor; Malignant Somatostatinoma; Merkel Cell Carcinoma; Metastatic Adrenal Gland Pheochromocytoma; Metastatic Carcinoid Tumor; Multiple Endocrine Neoplasia Type 1; Multiple Endocrine Neoplasia Type 2A; Multiple Endocrine Neoplasia Type 2B; Neuroendocrine Neoplasm; NonFunctional Pancreatic Neuroendocrine Tumor; Pancreatic Glucagonoma; Pancreatic Insulinoma; Recurrent Adrenal Cortex Carcinoma; Recurrent Adrenal Gland Pheochromocytoma; Recurrent Merkel Cell Carcinoma; SomatostatinProducing Neuroendocrine Tumor; Stage III Adrenal Cortex Carcinoma; oma; Stage IVB Thyroid Gland Medullary Carcinoma; Stage IVC Thyroid Gland Medullary Carcinoma; Thymic Carcinoid Tumor; VIPProducing Neuroendocrine Tumor; Well Differentiated Adrenal Cortex Carcinoma; Zollinger Ellison Syndrome Drug: Capecitabine; Drug: Temozolomide; Drug: Veliparib; Other: Pharmacological Phase 1 Endpoint Classification: Safety ; Intervention Model: Single Group Assignment; Masking: NCT September 2019
7 Efficacy and Safety of Posterior Retroperitoneoscopic Adrenalectomy: A Comparative Adrenal Mass; Adrenal Disease; Pheochromocytoma; Cushing Syndrome Procedure: Posterior retroperitoneoscopic adrenalectomy; Procedure: Transperitoneal laparoscopic adrenalectomy Allocation: Randomized; Endpoint Classification: Safety/Efficacy ; Parallel Assignment; Masking: Double Blind (Subject, Investigator); Primary Purpose: Treatment NCT May 2016 for the Evaluation of Efficacy of Pembrolizumab (MK-3475) in Patients With Rare Tumors Advanced Cancers Drug: Pembrolizumab; Behavioral: Phone Call Follow-Up Phase 2 Allocation: Non-Randomized; Endpoint Classification: Safety/Efficacy ; Intervention Model: Parallel NCT
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