Clinical trial Recruiting at 1 site Observational Ages 18 to 120

Study of Neuroendocrine Neoplasms and Adrenocortical Carcinoma

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

Run by National Institutes of Health Clinical Center (CC) · NCT05237934 · Data updated 2026-11-12

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.

More Neuroendocrine Tumors trials

Quick facts

Study typeObservational
Ages18 Years to 120 Years
SexAll
Enrollment300 (estimated)
SponsorNational Institutes of Health Clinical Center (CC)
NIH
Locations1 site (Bethesda, Maryland)
StatusRecruiting
StartedApril 25, 2022
Main results expectedDecember 31, 2032
Study endsDecember 31, 2032
Registry record updatedNovember 2, 2026
Trial IDNCT05237934 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

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

Probably not a fit

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

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

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

Who can join: the full rules

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 it's running

  • National Institutes of Health Clinical Center
    Bethesda, Maryland, United States
    Recruiting

Study contacts

  • Principal investigator: Jaydira Del Rivero, M.D. — National Cancer Institute (NCI)
  • Study coordinator: Anna Liza F Rivero
  • Email: anna.rivero@nih.gov
  • Phone: (240) 858-7946

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 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.