Study of Neuroendocrine Neoplasms and Adrenocortical Carcinoma

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

Observational National Institutes of Health Clinical Center (CC) · NCT05237934

This study is trying to learn more about how neuroendocrine tumors and adrenocortical carcinoma behave over time by collecting samples and information from people who have these rare cancers.

Quick facts

Study typeObservational
Enrollment300 (estimated)
Ages18 Years to 120 Years
SexAll
SponsorNational Institutes of Health Clinical Center (CC) NIH
Locations1 site (Bethesda, Maryland)
Trial IDNCT05237934 on ClinicalTrials.gov

What this trial studies

This observational study aims to evaluate the natural history of neuroendocrine neoplasms (NENs), including adrenocortical carcinoma (ACC), by collecting tissue samples and clinical data from participants. It focuses on understanding the patterns of disease progression and responses to various therapeutic interventions. Participants will be monitored over time to gather comprehensive data on their conditions, which will aid in improving management strategies for these rare cancers. The study includes individuals with confirmed or suspected NENs and aims to enhance knowledge about these malignancies.

Who should consider this trial

Good fit: Ideal candidates for this study are adults aged 18 and older with confirmed or suspected neuroendocrine neoplasms or adrenocortical carcinoma.

Not a fit: Patients without a diagnosis or suspicion of neuroendocrine neoplasms or adrenocortical carcinoma may not benefit from this study.

Why it matters

Potential benefit: If successful, this study could lead to improved understanding and management of neuroendocrine neoplasms, ultimately benefiting patients through better treatment strategies.

How similar studies have performed: Other studies have shown success in understanding neuroendocrine tumors, but this specific approach to longitudinally evaluate NENs is relatively novel.

Eligibility criteria

Show full inclusion / exclusion 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

Where this trial is running

Bethesda, Maryland

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions Neuroendocrine TumorsCarcinoma, NeuroendocrineClinical OutcomeAdvice in the Management of CancerPatterns of Disease ProgressionResponse or Lack of Response to Therapeutic InterventionsNatural History
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.