Guidelines
This has been adapted from the VHL alliance website.
Type of surveillance (tumors being screened)
History and physical examination
- Until age 5: Yearly from age 1
- Beginning at age 5: Yearly
- Beginning at age 11: Yearly
- Beginning at age 15: Yearly
- Beginning at age 30: Yearly
- Beginning at age 65: Yearly
- Pregnancy: Prior to conception
Blood pressure and pulse (pheochromoytomas/paragangliomas)
- Until age 5: Yearly from age 2
- Beginning at age 5: Yearly
- Beginning at age 11: Yearly
- Beginning at age 15: Yearly
- Beginning at age 30: Yearly
- Beginning at age 65: Yearly
- Pregnancy: Prior to conception
Dilated eye examination (retinal hemangiomablastomas)
- Until age 5: Every 6-12 months, beginning before age 1
- Beginning at age 5: Every 6-12 months
- Beginning at age 11: Every 6-12 months
- Beginning at age 15: Every 6-12 months
- Beginning at age 30: Yearly
- Beginning at age 65: Yearly
- Pregnancy: Prior to conception, then every 6-12 months
Metanephrines (pheochromocytomas/paragangliomas)
- Beginning at age 5: Yearly
- Beginning at age 11: Yearly
- Beginning at age 15: Yearly
- Beginning at age 30: Yearly
- Beginning at age 65: Stop routine
- Pregnancy: Prior to conception
MRI brain and spine w/wo contrast (CNS hemangiomablastomas)
- Beginning at age 11: Every 2 years
- Beginning at age 15: Every 2 years
- Beginning at age 30: Every 2 years
- Beginning at age 65: Stop routine
- Pregnancy: Prior to conception
Audiogram (endolymphatic sac tumors)
- Beginning at age 11: Every 2 years
- Beginning at age 15: Every 2 years
- Beginning at age 30: Every 2 years
- Beginning at age 65: Stop routine
MRI abdomen w/wo contrast (renal cell carcinomas, pheochromocytomas/paragangliomas, pancreatic neuroendocrine tumors/cysts)
- Beginning at age 15: Every 2 years
- Beginning at age 30: Every 2 years
- Beginning at age 65: Stop routine
- Pregnancy: Prior to conception
MRI Internal Auditory Canal (endolymphatic sac tumors)
- Beginning at age 15: Once