Paraganglioma

This phase 2 study tests belzutifan, a daily pill that blocks a protein called HIF-2α, in people with advanced rare cancers like pheochromocytoma/paraganglioma, pancreatic neuroendocrine tumors, VHL disease-associated tumors, and certain other solid tumors. The goal is to see if …

This phase 2 trial tests a radioactive drug called Lu-177-DOTATATE in 130 adults with rare adrenal or neck tumors that cannot be surgically removed. The drug is given four times over about 8 months, and researchers track how long the cancer stays under control. The goal is to see…

This early-stage trial tests a radioactive drug that seeks out and delivers radiation directly to cancer cells with a specific protein (somatostatin receptor). It is for adults with advanced lung, kidney, head and neck, digestive tract, or adrenal gland tumors that cannot be remo…

This study tests a new radioactive drug, [212Pb]VMT-alpha-NET, in people with advanced gastrointestinal neuroendocrine tumors or pheochromocytoma/paragangliomas that have already been treated with radiation therapy. The drug is designed to attach to a protein on the surface of th…

This trial offers a radioactive drug called 131I-MIBG to children and adults with advanced neuroblastoma that has not responded to standard treatments. The drug is designed to seek out and deliver radiation directly to tumor cells. The goal is to provide palliative control of the…

This study tests a radioactive drug called Lutetium-177 oxodotreotide in 74 people with advanced neuroendocrine tumors that have spread and are growing despite other treatments. The drug is designed to seek out and deliver radiation directly to tumor cells. Researchers are checki…

This early-phase trial tests a new drug called ADCT-701 in adults with rare cancers like neuroendocrine tumors, adrenal cancer, and malignant peripheral nerve sheath tumors. The goal is to find the safest dose and see if it can shrink tumors or slow disease. Participants receive …

This phase 2 trial is testing a drug called ONC206 in 90 people with advanced pheochromocytoma or paraganglioma, rare tumors of the adrenal glands. Participants must have tumors that cannot be removed by surgery and have not responded to or cannot have standard treatments. The st…

This study is testing a combination of two drugs—a targeted radioactive drug (177Lu-DOTATATE) and a PARP inhibitor (olaparib)—in children and teens aged 3 to 18 with certain solid tumors that have come back or not responded to treatment. The goal is to see if the combination is s…

This study tests a radioactive drug called I-MIBG in people with resistant neuroblastoma or related tumors (pheochromocytoma and paraganglioma). The drug is designed to deliver radiation directly to cancer cells. Researchers want to see if it can shrink tumors and how safe it is.…

This study tests a new drug called [212Pb]VMT-α-NET, which delivers a powerful type of radiation (alpha particles) directly to tumor cells that have a specific marker (SSTR2). The trial includes 300 adults with advanced neuroendocrine tumors or meningioma that cannot be removed b…

This early-phase trial tests a new treatment for people with advanced melanoma or other solid tumors that have spread. Doctors take a patient's own immune cells, modify them in a lab to better recognize and attack cancer, and give them back after a short course of chemotherapy. T…

This study tests the drug belzutifan in 100 people with von Hippel-Lindau (VHL) syndrome, a genetic condition that causes tumors in various organs. Researchers will track how well the drug shrinks tumors and how long it takes for the disease to progress, while also monitoring sid…

This study tests whether a new imaging agent called [18F]FAPI-74 can find certain cancers as well as or better than the standard PET tracer. About 320 adults with one of 11 cancer types (including pancreatic, liver, ovarian, and lung cancers) will receive both tracers and have th…

This study tests a new radioactive imaging agent called 68Ga-HA-DOTATATE to see if it can safely and accurately detect neuroendocrine tumors using PET/CT scans. About 600 people with known or suspected tumors will receive the agent and be followed for one year. The goal is to imp…

This study tests a newer type of PET/CT scan (Al18F-NOTA-LM3) against the current standard (68Ga-DOTATATE) to see which finds more tumors in people with pheochromocytoma or paraganglioma (PPGL). About 40 adults with suspected or confirmed PPGL will receive both scans, and doctors…

This study tests whether a special PET/MRI scan using a radioactive tracer called Ga68-DOTATATE can better detect certain brain tumors (like meningioma) and tell them apart from changes caused by past treatments. About 200 adults with these tumors will get the scan alongside stan…

This study is testing whether special PET scans using targeted tracers can accurately find and stage neuroblastoma and pheochromocytoma/paraganglioma tumors. About 30 people aged 1 to 70 will receive an injection of a radioactive tracer and then have a PET scan. The scan results …

This study aims to improve how doctors find and understand pheochromocytomas and paragangliomas, rare tumors that can cause dangerous high blood pressure. Researchers will use advanced imaging scans and genetic testing in up to 3,000 participants to learn more about these tumors.…

This study enrolls people with endocrine tumors (such as thyroid, parathyroid, adrenal, or pancreatic tumors) who are scheduled for surgery or biopsy. Researchers collect samples of the tumor, nearby healthy tissue, blood, and urine to analyze genetic and molecular changes. The g…

This study tests whether simple reminders—called nudges—sent to doctors and patients can increase the use of genetic testing for people with certain conditions like Parkinson's disease, ALS, or heart problems. The trial will compare different ways of prompting genetic testing, su…

This pilot study looks at how belzutifan, a drug already used for some tumors, changes the production of adrenaline-like hormones in people with pheochromocytoma and paraganglioma (PPGL). Over 5 days, researchers measure key substances in the hormone-making process to see if belz…

This study aims to discover new genes that may cause certain cancers to run in families. Researchers will collect blood samples and health information from 1,500 people in families where multiple members have had cancer, especially childhood cancers. The goal is to build a regist…

This study aims to bring molecular markers into routine care for patients with rare adrenal cancers. Researchers will collect blood, urine, and tumor samples from 450 patients before and after surgery to see if these markers can guide treatment decisions. The goal is to make thes…

This early-phase study is testing an investigational radioactive tracer called 18F-FluorThanatrace (FTT) for PET/CT scans in up to 30 people with pheochromocytoma or paraganglioma—rare tumors of the adrenal glands or nerve tissue. The tracer aims to measure a protein called PARP-…

This study is creating a large database to collect information on people with rare diseases like amyloidosis, sarcoidosis, and Gaucher disease. Researchers will track patients' health over time, including their symptoms, treatments, and outcomes. The goal is to improve diagnosis …

This study looks at the genes of people with rare nervous system tumors called pheochromocytoma and paraganglioma. Researchers want to find the genetic changes that cause these tumors and how they affect health. Up to 2,000 patients and their family members will provide DNA sampl…