The Vasculitis and Rare Disease Clinic
Dr. Jonathan Miner started the Vasculitis and Rare Disease Clinic in July of 2017. In its first year, the number of patients with vasculitis or vasculopathy seen in the clinic has grown from just 15 to over 100, with multiple new referrals seen each week. All new referrals are seen promptly (within 1-2 weeks) in add-on clinics. This includes patients with common vasculitides (e.g., ANCA-associated vasculitis and giant cell arteritis, GCA) as well as several patients with a rare genetic vasculopathy called retinal vasculopathy with cerebral leukoencephalopathy (RVCL), a disease initially described by Drs. John Atkinson and Gil Grand in the late 1980s. The Clinic works in tandem with the Miner lab to define mechanisms of rare disease pathogenesis and to identify novel treatments.
Many of the vasculitis and vasculopathy patients seen in our clinic have particularly severe or rare disease phenotypes that require careful monitoring. Numerous patients travel from far-away cities to be seen in our clinic (e.g., New York City, New Jersey, Philadelphia, Seattle, Minneapolis, Dallas, Phoenix, and Fort Smith).
New opportunities have arisen thanks to our patient population. We were selected as the only site in the Midwest for a Phase 3 clinical trial of sarilumab for GCA, and also selected as a site for a Phase 2 trial of an anti-C5a monoclonal antibody as add-on therapy in ANCA-associated vasculitis. We also recently completed the first clinical trial for RVCL. Additionally, the Miner laboratory has begun basic and translational studies to examine mechanisms of disease pathogenesis and to identify predictors of vasculitis flare.
With a strong referral base and a multi-disciplinary approach, we envision that our vasculitis clinic will eventually grow into a Center of Excellence. We are partnering with nephrology (Dr. Tingting Li), Pulmonary and Critical Care (Dr. Vladimir Despotovic), and Wash U otolaryngologists to provide comprehensive care to our patients. In order to accommodate the rapid growth of our clinic, we are welcoming Dr. Colin Diffie to our team in 2019.