About the NET Registry

The NET Registry is a place to collect information related to NETs that will be used for research in our efforts to achieve advancements in diagnosis, treatment, counseling and overall awareness of patients and their families affected by neuroendocrine tumors. The Registry is housed at Roswell Park Cancer Institute, Buffalo, New York. Roswell Park is a comprehensive cancer care center with a dedicated team of NET experts and is ranked one of the best cancer hospitals in the United States.

Mission Statement

Our mission is to provide education, awareness and support to individuals affected by NETs, and to provide a unique resource for discovery and understanding of NETs through molecular and genetic research that will lead to better informed personal health care decisions by nationwide patient and provider participation.

What We Do

The Registry is committed towards the collection of information and biospecimens (blood samples, tissue blocks from tissue removed during surgical procedures) from individuals that have been affected by neuroendocrine tumors. These resources will be used exclusively for genetic and molecular research, in an effort to improve diagnostic and treatment methods for NETs. The research results will be shared with the Registry participants to keep them updated with the latest news and advances in the field of NET. Impactful research will be conducted by researchers at Roswell Park in conjunction with external collaborators with NET expertise throughout the nation.

Eligibility Criteria

Participation in the NET Registry is voluntary and will incur no cost to you as a participant. In order to ascertain your eligibility to become a member of the Registry, you can start by completing and submitting a Prescreen Questionnaire. Following the receipt of the questionnaire, our staff will determine if your personal and medical history meets the criteria for inclusion in the Registry. You will be asked to sign a consent document and complete a detailed questionnaire. Following the completion of these steps, we will discuss your willingness to provide us with your blood sample and other biospecimens.