The American Autoimmune Related Diseases Association (AARDA) is partnering with Allegheny Health Network (AHN) and its newly opened Autoimmunity Institute — based in Pittsburgh, Pennsylvania — to study the costs of autoimmune disease to patients in the U.S., including that of just getting a correct diagnosis.
AARDA, a non-profit that addresses autoimmune disorders as a disease category, is providing seed funding for the study.
There are more than 100 known autoimmune diseases, including multiple sclerosis (MS), rheumatoid arthritis, Crohn’s and Graves’ disease, Sjögren’s syndrome, lupus, psoriasis, and myasthenia gravis.
The AHN Autoimmunity Institute, with its hub at West Penn Hospital, is a research center that aims to provide multi-disciplinary and multi-specialty care to patients living with autoimmune diseases, who often need to consult with doctors specialized in different fields. It features exam rooms, a dedicated infusion suite, and a research laboratory.
Specialties covered include allergy and clinical immunology, cardiology, dermatology, endocrinology, gastroenterology, infusion therapy, nephrology, primary care, pulmonary and rheumatology.
“A multispecialty approach to diagnosis, patient care, and research has been a long-standing need in this country. Our health system is set up in compartments and does not work well for patients with autoimmune disease as these patients often need to see several specialists and are left to coordinate their own care,” said Virginia Ladd, executive director of AARDA who will serve on the steering committee for the Autoimmunity Institute, said at its opening ceremony, according to a news release.
“It has been a long-term goal of our organization that such an institute be established to serve the autoimmune patient population. We are especially excited that the institute will provide diagnostic triage as our study found that on average patients see an average of four physicians over three years before receiving an accurate diagnosis, and over 62 percent were told that they are too concerned with their health or that their symptoms are in their head,” Ladd added.
AARDA goal for the Autoimmunity Institute is to found not only a center of service to patients in the region, but also one that can serve as a model for similar facilities nationwide of service to patients with autoimmune diseases and researchers working in the field.
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