Clinical trial · Observational
Natural History Study of Children and Adults With Neuroendocrine Neoplasms (NEN)s
Natural History Study of Children and Adults With Neuroendocrine Neoplasms (NENs)
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Why stopped (as posted): To avoid the duplication of effort and resources associated with the PI's branch change.
Summary
Brief summary (as posted)
Background: Neuroendocrine neoplasms (NENs) are rare tumors that originate in neuroendocrine cells. NENs can affect almost any part of the body. People with low-grade tumors can live many years. But high-grade tumors can be very aggressive. Researchers want to learn more about this type of cancer. This may help them design better treatments and supportive care studies. Objective: To gain a better understanding of neuroendocrine neoplasms. Eligibility: People starting at age 3 and older who have or are suspected of having NENs and are enrolled in protocol 19C0016, Natural History and Biospecimen Acquisition Study for Children and Adults with Rare Solid Tumors Design: Participants will be screened with questions about their medical history. This may be done over the telephone or in person. Participants medical records, test results, and imaging results will be reviewed. They may have scans and blood tests. They may sign a separate consent form for some of the tests. Participants will complete paper or electronic surveys. The surveys will ask about the effects of cancer on their wellbeing. Participants may give samples of their tumors from previous surgeries or biopsies. These samples will be used to study their tumor genes. Participants will get advice on how to manage their NENs. They will also get recommendations about potential treatment options. Participants home doctors will be contacted every 6 to 12 months. They will give medical data such as imaging and test results. Participants may have follow-up visits at NIH every 6 to 12 months. Participants will contact researchers if there are any changes in their tumor. Participants will be followed on this study for life.
Conditions
Conditions (2)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| Carcinoma, Neuroendocrine | Neuroendocrine Carcinoma | ONTOLOGY_EXACT | 0.98 |
| Neuroendocrine Tumors | Neuroendocrine Tumor | ONTOLOGY_EXACT | 0.90 |
Interventions
Interventions (0)
Data not yet available
Design
Arms and outcomes
Arms (1)
- label
- Cohort 1
- description
- Subjects with confirmed/suspected NENs.
Primary outcomes (1)
- measure
- natural history of neuroendocrine neoplasms
- timeFrame
- ongoing
- description
- clinical presentation, patterns of disease progression, response or lack of response to therapeutic interventions, disease recurrence and overall survival
Eligibility
Eligibility (as posted)
- Sex
- All
- Minimum age
- 3 Years
Show eligibility criteria text
* INCLUSION CRITERIA: * Enrollment into NCI protocol 19C0016 'Natural History and Biospecimen Acquisition Study for Children and Adults with Rare Solid Tumors'. * Age greater than or equal to 3 years old * Ability of subject or parent/guardian to understand and the willingness to sign a written consent document. * Subjects with: --histologically or cytologically documented NENs, 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-HIAA), gastrin, somatostatin, catecholamines, metanephrines, calcitonin, fasting insulin, C-peptide (proinsulin), glucagon, anterior pituitary hormones, OR * Suspicion of NEN (from any site/origin) on axial imaging (CT/MRI/FDG, PET/68Ga-DOTATATE scan, FDOPA PET scan). EXCLUSION CRITERIA: None
References
Publications (0)
Data not yet available