Clinical trials and research for neuroendocrine tumors

While we’ve already learned a lot about neuroendocrine tumors (NETs) and adopted a range of therapies, more work remains. At Penn Medicine, we’re focused on answering scientific questions about these complex tumors and developing new and improved treatments. We conduct extensive research and run a growing and diverse portfolio of clinical trials.

We always consider where clinical trials may fit into the full scope of your treatment. While we offer a number of studies — many based at Penn — we can also help you find options at other programs based on your personalized treatment needs.

Clinical trials for neuroendocrine tumors

Neuroendocrine tumors often grow slowly, even when they metastasize (spread). That pace means people may choose to travel for specialized care, including clinical trials. We welcome you to reach out about one of our trials, even if you do not receive your care here.

Researchers design clinical trials to confirm safety and measure the effectiveness of emerging treatments. Participating in a trial may offer you a treatment option and the chance to play a role in innovation. You can make a meaningful contribution to moving the NET field forward.

NET clinical trials look to develop new therapies or refine existing approaches. They also test new treatment combinations and sequences. Many studies focus on drug therapy for neuroendocrine tumors. While doctors can already turn to a range of NET treatments when surgery is not enough, there’s still room for improvement and further options.

Driving neuroendocrine tumor research at Penn

Improving NET treatment and developing further personalized therapy depend on a better understanding of how tumors form, grow and spread. Our program works on the research that makes clinical trials possible, with a focus on moving insights from the lab to clinical care.

These efforts include taking an innovative look at disease, sharing work through leading publications, and managing a series of unique resources and projects.

Making a Difference: Supporting the NET Biobank and Data Repository

Many of the people who trust us for care also contribute to the NET Biobank and Data Repository. This vital resource contains one of the world’s largest collections of biological samples and medical information related to neuroendocrine tumors.

Anyone with a pheochromocytoma, paraganglioma, or GI or pancreatic NET can volunteer. People whose genetics increase NET risk can also join, even if healthy. Participation involves a few easy steps, none of which affect your treatment:

  • Our team collects key information about the tumor and your health, which goes into a registry. One part of the program handles pheo-paras, the other, pancreatic and GI NETs.
  • We take a blood sample, if you’re willing.
  • If you’re undergoing surgery to remove a tumor, we ask for a tissue sample, if possible.
  • Biological samples go into special storage.
  • Names and other identifying details get removed from all records and samples.

More than 400 people have participated for pheo-para, and nearly 500 for GI and pancreatic NETs. We share resources with NET researchers around the world and also conduct our own investigations. While you may not directly benefit from those insights, others can. Our research efforts include:

  • Learning more about tumor biology
  • Finding better ways to predict which tumors are more likely to metastasize and which ones may return
  • Identifying new treatment targets
  • Improving care in our clinics
  • Managing tumors for women who are pregnant
  • Developing individualized screening and monitoring for people with genetic risk
  • Determining how likely particular, inherited genetic changes are to cause disease
  • Studying why some people with genetic risk develop tumors and others don’t

Awarding NET Pilot Funding

We regularly award startup NET research funding across Penn Medicine, not just within our program. These NET program pilot awards have led to projects such as:

  • Potentially using drugs called PARP inhibitors to stop cancerous cells from repairing themselves, making them more likely to die
  • Possibly tapping CRISPR to delete aspects of tumor cells, creating vulnerabilities for targeting
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