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Observational Study of Neuroendocrine Neoplasms (NENs) and Adrenocortical Carcinoma (ACC)

This study is looking at neuroendocrine neoplasms (NENs), which are rare cancers that can affect many parts of the body, including adrenocortical carcinoma (ACC). Researchers want to understand more about how these cancers develop and progress over time. You might be able to join if you are at least 18 years old and have a confirmed diagnosis of NENs or ACC, either through tissue samples or blood/urine tests showing high levels of certain markers like chromogranin A. The study aims to learn about the natural history of these conditions. This is an observational study, meaning no specific treatments are being tested. The study plans to include about 300 participants, but its current recruitment status is unclear.

Study design
This is an observational study, meaning no specific treatments are given. It aims to enroll about 300 participants.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
The natural history of neuroendocrine neoplasms including ACC will be measured on an ongoing basis.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT05237934

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

Recruiting
Not specifiedAges 18+Observational
National Cancer Institute (NCI)
~300 participants
Updated 2025-11-12 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
natural history of neuroendocrine neoplasms including ACC
Measured over ongoing

Conditions

Neuroendocrine Tumors
Carcinoma, Neuroendocrine

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Where it's being run

1 sites across 1 states
Maryland1

Study leadership

  • Jaydira Del Rivero, M.D. · PRINCIPAL_INVESTIGATOR · National Cancer Institute (NCI)

Who to contact

Anna Liza F Rivero
[email protected]
(240) 858-7946
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Eligibility criteria

Inclusion

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
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
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
a germline genetic variant that predisposes to NETs including ACC.

What this trial measures

  • natural history of neuroendocrine neoplasms including ACCongoing

    To comprehensively and longitudinally evaluate the natural history of participants with NENs and allow sample acquisition for use in the study of NENs