NETTRO connects patients, researchers, clinicians, and industry to move discoveries from the lab to the people who need them.
The Neuroendocrine Tumor Translational Research Organization (NETTRO) is a 501(c)(3) nonprofit created to shorten the distance between discovery and care for rare pituitary neuroendocrine tumors (PitNETs).
The pituitary gland is a pea‑sized gland at the base of the brain; it is often called the “master” endocrine gland because it secretes hormones that regulate many other endocrine glands. Tumors arising in or near the pituitary may be benign yet behave as chronic hormonal disorders. Patients often endure years of misdiagnosis and incomplete treatment, and translational research on PitNETs remains under‑studied compared with other endocrine tumors.
We support patient-driven science and community engagement to improve outcomes. We inform patient insights, clinician expertise, scientific advances and accessibility from payers with one another, leading to more effective diagnostics, therapies and quality of life outcomes.
Connect patients, researchers, clinicians, and industry around a shared commitment to translational research with a focus on pituitary neuroendocrine tumors.
Ensure patients shape the questions, methods, and outcomes at every stage of the research process.
Catalyze science through partnerships and patient-informed frameworks.
The National Biorepository and Resource for Pituitary Neuroendocrine Tumor Translational Research (BioPitNeT) is an open source, clinically relevant deep tumor phenotyping platform and biorepository.
In 2024, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) awarded the interdisciplinary team the RC2 High Impact, Interdisciplinary Science in NIDDK Research Areas grant to establish BioPitNeT.
To establish the biorepository resources, including organoids, that are benchmarked to the patients’ PitNET tissue of origin
To develop a PitNET clinically relevant classification system for Cushing’s Disease
To establish induced pluripotent stem cell (iPSCs) lines genetically engineered to model corticotroph subtype PitNETs as a resource for investigating genetic underlying mechanisms of Cushing’s Disease.
NETTRO was created by the Chair of the Community Engagement and Patient Advocacy Committees as a way to provide ongoing, sustainable education and partnerships with all stakeholders to promote translational research. Ultimately, we hope to provide the patient a better quality of life.
NETTRO is built as a connective tissue, not a competitor, for neuroendocrine communities. We formalize partnerships with a variety of stakeholders involved in the bench-to-bedside process to promote truly translational research.
The heart of everything we do. Patient voice shapes our research priorities and programs.
We partner with research teams to ensure patient-informed science reaches the lab.
We amplify existing research efforts rather than duplicate them.
We bridge clinical expertise with patient experience to improve diagnostic and treatment pathways.
We connect industry partners with the patient community to align research with real-world needs.
We ensure that breakthrough research translates into accessible care for patients.
Whether your work involves science, care, lived experience of pituitary neuroendocrine tumors, or simply have a passion to support those that do, we want to hear from you.