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Huntsman Cancer Institute at the University of Utah is the first to be designated as a Clinical and Research Center of Excellence by Pheo Para Alliance. The Alliance dedicates itself to helping patients with pheochromocytoma (pheo) and paraganglioma (para), while educating and providing support in the community. Huntsman Cancer Institute was previously designated as a Clinical Center of Excellence in 2021.
Pheochromocytoma and paraganglioma are rare neuroendocrine tumors that can be benign, or not cancerous. Thirty-five percent of people diagnosed with these tumors have a genetic mutation, making it possible to be passed on to children. As a Center of Excellence, Huntsman Cancer Institute must provide high-quality treatment, care, education, and clinical trials at the same site for patients.
“Pheochromocytomas and paragangliomas are rare, making the likelihood of getting a second one very low, unless you have a hereditary cause,” says Samantha Greenberg, MS, MPH, CGC, genetic counselor and co-director of the Paraganglioma Clinic at Huntsman Cancer Institute. “We want to do genetic testing for the patient, as well as their family, so they know who is at risk for these tumors.”
Huntsman Cancer Institute follows over 300 patients with pheochromocytoma and paraganglioma and will meet with 40 to 50 patients each year. Greenberg says that Huntsman Cancer Institute is not only caring for patients, but moving research forward and training students, residents, and fellows.
“You need an experienced team that can see a lot of patients each year,” says Greenberg. “Having a Center of Excellence designation is beneficial because it establishes us as a safe and comprehensive place for patients to come and know they are in the hands of experts.”