How UVA established a high risk clinic for a rare genetic syndrome

Specialized service meets patient needs and drives utilization

UVA case study cover


Patients with rare hereditary cancer syndromes have complex risk management needs that require a greater level of coordination than most cancer programs are prepared to provide. Many programs fail to realize the efficacy of a high risk clinic for these patients, particularly when low volumes deter buy-in from leadership.

The organization

The Emily Couric Clinical Cancer Center is part of the UVA Health System, a 612-bed academic medical center located in Charlottesville, VA. The Cancer Center established a high risk clinic for patients with Li-Fraumeni syndrome (LFS), a rare genetic disorder that greatly increases the risk of developing several types of cancer.

The approach

UVA’s Cancer Center addressed large gaps in care for patients with LFS by establishing cross-departmental partnerships and using a coordinated care team to deliver comprehensive, specialized risk management.

The result

The high risk clinic provides specialized care for patients with LFS who struggle to obtain appropriate risk management and care coordination. Additionally, it is a market differentiator for the program and drives significant downstream revenue, despite its low volumes.

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