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May 2022

New Natural History Study of Neuroendocrine Tumors and Neuroendocrine Carcinoma Opens at the National Cancer Institute

You can help physicians and scientists learn more about neuroendocrine cancer in order to develop future treatment options. A new clinical study, sponsored by the National Cancer Institute (NCI), has just opened and is looking to recruit and follow neuroendocrine neoplasm (NENs) and adrenocortical carcinoma (ACC) patients for a period of ten years in order to learn more about these uncommon cancers. Tissue Procurement and Natural History Study of Neuroendocrine Neoplasms (NENs) Including Adrenocortical Carcinoma (ACC), with principal investigator Jaydira Del Rivero, MD, is a national and international study.

Participants in the study must be 18 years or older and can have either a confirmed diagnosis of a neuroendocrine neoplasm – either neuroendocrine tumors (NETs) or neuroendocrine carcinoma (NEC) -- or suspected NENs, including ACC, which is also a hormone producing cancer.

While surgery is generally the first treatment for localized NETs, there are a variety of treatment options for patients with advanced NETs. When to apply a given option, what combination therapeutic approach should be used, how long treatment should be continued, and in what subgroup of patients a particular treatment option should be used is presently unclear and will also be a focus of the study.

This will be one of the first studies to examine environmental impact on the development of NENs.

Participants will initially travel to the NCI in Bethesda, Maryland, for a variety of tests, including blood work and nuclear imaging, all available to them at no charge.

The tissue procurement component of the study will be fresh tissue from surgery or a biopsy or preserved tissue from surgery up to 10 years ago. This will enable researchers to extract DNA and RNA for genomic sequencing. At the same time, the study will evaluate circulating tumor DNA to determine if a blood test can be used rather than tissue from a biopsy or surgery. Submitting tissue for the study is optional and patients are welcome to participate in the study if they are not submitting tissue.

Patients will be followed every 6 to 12 months, but don’t need to come to the NCI every time. Ideally, patients will come to the NCI once a year.

The study also includes cancer predisposition syndromes associated with neuroendocrine neoplasms such as multiple endocrine neoplasia type 1 or 2, and VHL, Von-Hippel Lindau, patients.

According to Dr. Del Rivero, this study will “give patients hope for new treatment options. Information from the study will be shared broadly with physicians. The goal of the study is to have a greater understanding of how NENs behave so we can develop new treatments that both improve patients’ quality of life and extend their lives.”

For more information, contact Dr. Del Rivero at 240-858-3851 or delriveroj@mail.nih.gov.

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