UVA was recently named a Jeffrey Modell Foundation Diagnostic and Research Center in acknowledgement of its nationally recognized efforts to provide comprehensive care to patients with primary immunodeficiency (PID). These rare, chronic disorders can cause life-threatening complications if not managed appropriately. With support from the Modell Foundation, UVA has recently established a dedicated PID Clinic for adults and children, one of just a handful in the region that will fulfill an unmet need for clinical immunology.
“The Modell Foundation identifies centers across the world that provide what they consider diagnostic and research excellence. There are only around 350 worldwide — and UVA is one of those centers,” says immunologist Monica Lawrence, MD. “This collaboration will allow us to fund a nurse coordinator as well as providing support research efforts to expand our knowledge of immunodeficiency, which is exciting. We will also have access to a network of resources through the Modell Foundation, including grant funding for labs or therapies that are not covered by a patient’s insurance. This will help ensure we’re providing the most advanced care available to our patients.”
Establishing a dedicated clinic for PID patients also means they will have something in short supply at a traditional clinic: time. “Rather than squeezing in these patients in between our standard allergy appointments, we will have adequate time to attend to their care needs, which can be complex,” says Lawrence.
“We have a lot of pre-clinic prep, which is not typical but is necessary for these patients. We get all of the patient records in advance so we comprehensively review them prior to the appointment. We see them in clinic for a longer period of time and we provide a post-visit follow-up as well; our nurse coordinator helps coordinate medications, labs and follow-up testing ... anything that is needed. So it’s a much more comprehensive approach to care.”
UVA currently follows approximately 300 patients with PID from across the Commonwealth and beyond. To learn more about the UVA PID Clinic, contact Nurse Coordinator Darla Low, RN, at 434.243.7290.
To refer a patient to the UVA PID Clinic, call UVA Physician Direct at 800.552.3723.