Pancreatic endocrine tumor, also known as pancreatic neuroendocrine tumor (PNET), describes a group of endocrine tumors originating in the pancreas that are usually indolent and benign, but may have t...
Comprehensive, easy-to-understand information about this condition
How we create this content →The documentation for pancreatic neuroendocrine tumors is limited due to their rarity, affecting only 1-5 in 10,000 individuals. This low prevalence results in fewer systematic clinical studies and a lack of comprehensive data on genetic factors and clinical features. Additionally, the phenotypic variability and overlap with other conditions complicate the characterization of PNETs.
To navigate your care for pancreatic neuroendocrine tumors, consider consulting with an oncologist who specializes in neuroendocrine tumors. They can provide tailored guidance and treatment options. Additionally, you may want to explore clinical trials that could offer access to emerging therapies. The National Organization for Rare Disorders (NORD) provides resources and support at rarediseases.org. Participating in a clinical trial may also provide valuable insights into your condition and contribute to research efforts.
There are currently 164 active clinical trials investigating various aspects of pancreatic neuroendocrine tumors. Notably, cabozantinib is an FDA-approved treatment, while Foslinanib and a modified human adenovirus are among the designated orphan drugs in development. For more information on ongoing trials, visit ClinicalTrials.gov at https://clinicaltrials.gov/search?cond=pancreatic%20neuroendocrine%20tumor.
Actionable guidance for navigating care for pancreatic neuroendocrine tumor
To navigate your care for pancreatic neuroendocrine tumors, consider consulting with an oncologist who specializes in neuroendocrine tumors. They can provide tailored guidance and treatment options. Additionally, you may want to explore clinical trials that could offer access to emerging therapies. The National Organization for Rare Disorders (NORD) provides resources and support at rarediseases.org. Participating in a clinical trial may also provide valuable insights into your condition and contribute to research efforts.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation for pancreatic neuroendocrine tumors is limited due to their rarity, affecting only 1-5 in 10,000 individuals. This low prevalence results in fewer systematic clinical studies and a lack of comprehensive data on genetic factors and clinical features. Additionally, the phenotypic variability and overlap with other conditions complicate the characterization of PNETs.
To navigate your care for pancreatic neuroendocrine tumors, consider consulting with an oncologist who specializes in neuroendocrine tumors. They can provide tailored guidance and treatment options. Additionally, you may want to explore clinical trials that could offer access to emerging therapies. The National Organization for Rare Disorders (NORD) provides resources and support at rarediseases.org. Participating in a clinical trial may also provide valuable insights into your condition and contribute to research efforts.
There are currently 164 active clinical trials investigating various aspects of pancreatic neuroendocrine tumors. Notably, cabozantinib is an FDA-approved treatment, while Foslinanib and a modified human adenovirus are among the designated orphan drugs in development. For more information on ongoing trials, visit ClinicalTrials.gov at https://clinicaltrials.gov/search?cond=pancreatic%20neuroendocrine%20tumor.
Actionable guidance for navigating care for pancreatic neuroendocrine tumor
To navigate your care for pancreatic neuroendocrine tumors, consider consulting with an oncologist who specializes in neuroendocrine tumors. They can provide tailored guidance and treatment options. Additionally, you may want to explore clinical trials that could offer access to emerging therapies. The National Organization for Rare Disorders (NORD) provides resources and support at rarediseases.org. Participating in a clinical trial may also provide valuable insights into your condition and contribute to research efforts.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation for pancreatic neuroendocrine tumors is limited due to their rarity, affecting only 1-5 in 10,000 individuals. This low prevalence results in fewer systematic clinical studies and a lack of comprehensive data on genetic factors and clinical features. Additionally, the phenotypic variability and overlap with other conditions complicate the characterization of PNETs.
To navigate your care for pancreatic neuroendocrine tumors, consider consulting with an oncologist who specializes in neuroendocrine tumors. They can provide tailored guidance and treatment options. Additionally, you may want to explore clinical trials that could offer access to emerging therapies. The National Organization for Rare Disorders (NORD) provides resources and support at rarediseases.org. Participating in a clinical trial may also provide valuable insights into your condition and contribute to research efforts.
There are currently 164 active clinical trials investigating various aspects of pancreatic neuroendocrine tumors. Notably, cabozantinib is an FDA-approved treatment, while Foslinanib and a modified human adenovirus are among the designated orphan drugs in development. For more information on ongoing trials, visit ClinicalTrials.gov at https://clinicaltrials.gov/search?cond=pancreatic%20neuroendocrine%20tumor.
Actionable guidance for navigating care for pancreatic neuroendocrine tumor
To navigate your care for pancreatic neuroendocrine tumors, consider consulting with an oncologist who specializes in neuroendocrine tumors. They can provide tailored guidance and treatment options. Additionally, you may want to explore clinical trials that could offer access to emerging therapies. The National Organization for Rare Disorders (NORD) provides resources and support at rarediseases.org. Participating in a clinical trial may also provide valuable insights into your condition and contribute to research efforts.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
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Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 30, 2026
Consider asking your healthcare providers these condition-specific questions
European rare disease database
Genetic and Rare Diseases Info Center
AI-Generated Content: This summary was generated using AI. Content has been fact-checked. Always consult with qualified healthcare providers for medical guidance.
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.
Organizations with orphan designations or approved therapies for this disease
Advanced Accelerator Applications, USA
Other
Delcath Systems, Inc.
Other
Elicera Therapeutics AB
Other
EntreMed, Inc.
Other
EpicentRx, Inc.
Other
Esanex Inc.
Other
Exelixis, Inc.
Other
Hutchison MediPharma Ltd.
Other
Ipsen Biopharmaceuticals, Inc.
Other
Jubilant DraxImage Inc
Other
Lantheus Medical Imaging, Inc.
Other
M. Sue O'Dorisio, MD, PhD
Other
Mateon Therapeutics, Inc.
Other
Narodowe Centrum Badan Jadrowych
Other
Novartis Pharmaceuticals Corporation
Other
Orano Med Theranostics SAS
Other
Progenics Pharmaceuticals, Inc.
Other
RadioIsotope Therapy of America (RITA) Foundation
Other
RadioMedix Inc.
Other
Seneca Biopharma, Inc.
Other
TaiRx, Inc.
Other
Tarveda Therapeutics, Inc.
Other
University of Iowa Hospital & Clinics
Other