About the Paraganglioma Clinic
Our team of experts is committed to making sure patients with paragangliomas and/or genetic risk for these tumors receive the best possible care. Our team of surgeons, medical oncologists, genetic counselors, and other specialists work together to develop a care plan designed to meet the unique needs of each patient. Because we oversee care for hundreds of patients with this syndrome, you can be assured that you are in the care of a team that has the experience needed for this rare condition.
Paragangliomas are rare neuroendocrine tumors that occur in the peripheral nervous system or adrenal glands. Paragangliomas may also be known by these names:
- Carotid body tumors
- Glomus jugulare
- Extra-adrenal paragangliomas
Experts recommend all people with paragangliomas get genetic testing, since up to 40% of these tumors are hereditary. People with hereditary paragangliomas may be at risk for other tumors. Mutations in the SDHx genes increase someone’s risk for paragangliomas, tumors in the digestive system (called gastrointestinal stromal tumors, or GISTs), and kidney cancer. People with SDHx mutations can get blood tests and imaging tests to screen for these tumors.
The Paraganglioma Clinic helps patients and their families create personal screening plans. We also help schedule follow-up care for people at high risk for paragangliomas. Our health care team includes specialists in every area of paraganglioma care. Our goal is to provide a cohesive and patient-centered approach.
Frequently Asked Questions
Who can visit the clinic?
The Paraganglioma Clinic is for children and adults who meet one or both of these criteria:
- Have a genetic test that showed a pathogenic variant (mutation) in the SDHx genes (SDHA, SDHB, SDHC, SDHD, SDHAF2)
- Have a personal and family history of paragangliomas
Please call 801-587-9555 if your genetic tests show different mutations. Our genetic counselors can help you decide if this clinic is right for you.
When I visit the clinic, what will I do?
- Review your personal and family health history and lifestyle factors that may contribute to cancer risk
- Have blood testing to screen for paragangliomas
- Get a physical exam
- Talk with a clinic team member about your personal screening plan and follow-up care based on test results
- Find out if you need imaging tests and, if so, get those imaging tests scheduled
- Talk with a doctor or genetic counselor about the chance to take part in a research study about paraganglioma risk
Do I need genetic testing before I come?
We recommend all people with a personal diagnosis of paraganglioma or pheochromocytoma get genetic counseling and testing. Learn more about paraganglioma and pheochromocytoma from the National Cancer Institute.
While most people in this clinic have a mutation in the SDHx genes, some people qualify for this clinic if they have a personal and family history of paragangliomas, even without the genetic mutation.
If you or a family member would like to learn more, please call us to get in touch with a genetic counselor: 801-587-9555