Leslie Edwin, president of the Cushing’s Support and Research Foundation – CSRF -, shares a joint presentation on patient-reported outcomes and lays out the need for patient registries. This is a recorded session presented with Dr. Elena Valassi, M.D., Ph.D. – Hospital de la Santa Creu i Sant Pau, Barcelona, Spain, at the European Congress of Endocrinology in Milan in May 2022. Both speakers advocate for more information, better understanding, and validation of the patient experience with Cushing’s Disease and Syndrome. Activity and research on long-term quality-of-life measurements are highlighted along with the existing European Cushing’s Patient Registry (ERCUSYN) and CSRF’s proposed patient registry.
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