Carolyn E Schwartz1,2, Wesley Michael3, Bruce D Rapkin4. 1. DeltaQuest Foundation, Inc., 31 Mitchell Road, Concord, MA, 01742, USA. carolyn.schwartz@deltaquest.org. 2. Department of Medicine and Orthopaedic Surgery, Tufts University Medical School, Boston, MA, USA. carolyn.schwartz@deltaquest.org. 3. Rare Patient Voice, LLC, Towson, MD, USA. 4. Department of Epidemiology and Population Health, Albert Einstein College of Medicine, Bronx, NY, USA.