Tissue Procurement and Natural History Study of Neuroendocrine Neoplasms (NENs) Including Adrenocortical Carcinoma (ACC)

Launched by NATIONAL CANCER INSTITUTE (NCI) · Feb 11, 2022

Keywords

ClinConnect Summary

This clinical trial is focused on understanding neuroendocrine neoplasms (NENs), which are rare types of cancers that can develop in various parts of the body, including the pancreas, lungs, and adrenal glands. The study aims to learn more about how these tumors behave over time and to collect samples from participants to help researchers better understand the disease. This information will ultimately help doctors find the best treatment options for patients with NENs, which currently have limited standardized therapies.

To participate, you must be 18 years or older and either have been diagnosed with NENs or adrenocortical carcinoma (ACC) or suspected to have them based on certain medical tests. If you join the study, you will undergo a medical history review, physical exams, and various tests, including blood and urine samples. You may also provide tissue samples from previous procedures or, if necessary, undergo optional biopsies to collect more tissue for research. Participants will have regular follow-up visits to monitor their health and will have the opportunity to ask questions about their condition and treatment options. This study is open to individuals of all genders and aims to follow participants for life, helping to gather valuable data over time.

Gender

ALL

Eligibility criteria

• * INCLUSION CRITERIA:
• • Age \>= 18 years old
• • The ability of the participant to understand and the willingness to sign a written consent document.
• * Participants with the documentation of:
• • histological or cytological confirmation of NENs or adrenocortical cancer
• • OR
• • --biochemical evidence of neuroendocrine tumor (serum/urinary) based on elevated levels of chromogranin A, pancreatic polypeptide, neuron-specific enolase, vasoactive intestinal polypeptide, serotonin (urinary 5-hydroxyindoleacetic acid (5-HIAA)), gastrin, somatostatin, catecholamines, metanephrines, calcitonin, fasting insulin, Cpeptide (proinsulin), glucagon, anterior pituitary hormones
• • OR
• • --Suspicion of NEN (from any site/origin) on axial imaging (computed tomography (CT)/ magnetic resonance imaging (MRI) / fluorodeoxyglucose (FDG) positron emission tomography (PET) / 68Ga-Dotatate scan
• • OR
• • --a germline genetic variant that predisposes to NETs including ACC.
• EXCLUSION CRITERIA:
• • None