Henry Ford Nationally Recognized as Von Hippel-Lindau Clinical Care Center

May 23, 2019

DETROIT – Henry Ford Hospital in Detroit has been recognized as a von Hippel-Lindau (VHL) Clinical Care Center by the national VHL Alliance Clinical Advisory Council, bringing together leading experts from more than a dozen specialties to help patients and their families navigate, monitor and treat this complex, inherited hereditary cancer syndrome.

Approximately one in 36,000 people worldwide will develop VHL, often affecting multiple members of a family. Patients with VHL syndrome commonly develop tumors and cysts in multiple organs, including the kidneys, pancreas, brain, spine, and adrenal glands. Tumors may be either benign or cancerous, and most frequently appear in young adults, but symptoms can occur at any time.

The disease requires a lifetime of care, including regular screenings for new tumor growth so treatment – most often surgery – can be provided as early as possible.

“Having Henry Ford recognized as a VHL Clinical Care Center will help in getting entire families of VHL patients treated for many types of cancers at the Henry Ford Cancer Institute,” says Craig Rogers, M.D., Henry Ford Health System’s VHL program leader and chair of the Department of Urology. “With the planning for the new Brigitte Harris Cancer Pavilion in Detroit, and the emphasis on Precision Medicine, I am excited that we can bring our unique strengths and staff to help these families with VHL.”

Dr. Rogers completed his fellowship training at the National Cancer Institute, which helped discover the VHL gene and pathways and was a national referral center for VHL patients.

As a national leader in minimally-invasive robotic surgery techniques, and with one of the largest and most experienced cancer surgery teams in the country, Dr. Rogers notes that Henry Ford is well positioned to offer VHL patients the most-advanced and effective screening and treatments available

Henry Ford’s VHL Clinical Care Program brings together experts from several medical specialties – genetics, urology, neurosurgery, nephrology, surgical oncology, radiology, ophthalmology, medical oncology, neurology and audiology – all in one convenient care location.

Physician specialty leads participating in the VHL Clinical Center include: David Kwon, M.D.; Ghaus Malik, M.D.; Ian Lee, M.D.; Jacquelyn Roberson, M.D.; Uday Desai, M.D.; Arti Bhan, M.D.; Jerry Yee, M.D.; Clara Hwang, M.D.; Scott Schwartz, M.D.; and Karen Enright, M.D., Ph.D.

This coordinated care approach ensures a treatment plan that includes regular screenings and appropriately timed therapies for VHL patients and their families.

VHL symptoms typically arise when patients are in their 20s or 30s. Patients who have a parent with VHL have a 50 percent chance of inheriting the disease. VHL is not curable. It is the most common among genetic kidney cancer syndromes; Most VHL patients will develop kidney cancer, meaning close monitoring and regular screening is crucial so tumors can be treated as early as possible.

Without surgical treatment, kidney tumors may lead to dialysis, eye tumors can cause blindness, inner ear tumors can cause deafness, and brain tumors can lead to paralysis. While some tumors are cancerous, and others are benign, both types of tumors may require treatment.

In addition to genetic testing for families, Henry Ford’s VHL Clinical Care Program screening for new patients includes abdominal ultrasound, ophthalmic and neurological examination, serum catecholamine measurement, and an auditory symptom questionnaire.

To schedule an appointment or learn more about Henry Ford’s VHL Clinical Care Program, visit henryford.com/services/von-hippel-lindau or call (888) 777-4167.

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MEDIA CONTACT:  Jeff Adkins / jadkins6@hfhs.org / (586) 307-2027