The Duchenne registry has enrolled participants with dystrophinopathies to assess aspects of the patient experience, i.e., demographics, corticosteroid use, musculoskeletal function, symptoms of pain, and bone, cardiac and pulmonary health. All individuals with dystrophinopathy are invited to participate through outreach. The goal of this study was to assess the burden of disease of BMD as self-reported by participants in the Duchenne registry. Participants self-reported a BMD diagnosis (n=324 unique). Those uncertain of their diagnosis (BMD vs. Duchenne muscular dystrophy [DMD]) were not included. Approximately 4000 participants with DMD are enrolled. Average age of participants was 19.9 years. Only 10% had ever participated in a clinical trial, predominantly natural history studies. Average age at diagnosis was 9.5 years, with 25% ≤ 8 years. Of adults, 51% used a wheelchair for mobility. Of participants, 18% were currently on corticosteroids, approximately equally divided between prednisone and deflazacort, starting at a mean age of 7, with an additional 10% reporting that they were previously on corticosteroids but were now discontinued. While corticosteroid use was more common among those <18, 10% of adults continued to be treated with corticosteroids. Of participants, 21% had had a fracture with minimal trauma, with only 24% of these reporting current or previous corticosteroid use. Of those completing a validated PROMIS pain measure, 78% said that pain interfered with their enjoyment of life, 25% quite a bit or very much within the last week, while 75% said that pain interfered to some extent with day-to-day activities. These results support significant functional impairment in this self-selected registry population with BMD. In this population, diagnosis occurred early, and despite side effects, corticosteroid use was not uncommon; fractures were common regardless of corticosteroid use. The impact of pain on activities and quality of life is high and deserves further investigation. Survey results underscore the need for therapeutic approaches that impact both muscle function and quality of life. The Duchenne registry has enrolled participants with dystrophinopathies to assess aspects of the patient experience, i.e., demographics, corticosteroid use, musculoskeletal function, symptoms of pain, and bone, cardiac and pulmonary health. All individuals with dystrophinopathy are invited to participate through outreach. The goal of this study was to assess the burden of disease of BMD as self-reported by participants in the Duchenne registry. Participants self-reported a BMD diagnosis (n=324 unique). Those uncertain of their diagnosis (BMD vs. Duchenne muscular dystrophy [DMD]) were not included. Approximately 4000 participants with DMD are enrolled. Average age of participants was 19.9 years. Only 10% had ever participated in a clinical trial, predominantly natural history studies. Average age at diagnosis was 9.5 years, with 25% ≤ 8 years. Of adults, 51% used a wheelchair for mobility. Of participants, 18% were currently on corticosteroids, approximately equally divided between prednisone and deflazacort, starting at a mean age of 7, with an additional 10% reporting that they were previously on corticosteroids but were now discontinued. While corticosteroid use was more common among those <18, 10% of adults continued to be treated with corticosteroids. Of participants, 21% had had a fracture with minimal trauma, with only 24% of these reporting current or previous corticosteroid use. Of those completing a validated PROMIS pain measure, 78% said that pain interfered with their enjoyment of life, 25% quite a bit or very much within the last week, while 75% said that pain interfered to some extent with day-to-day activities. These results support significant functional impairment in this self-selected registry population with BMD. In this population, diagnosis occurred early, and despite side effects, corticosteroid use was not uncommon; fractures were common regardless of corticosteroid use. The impact of pain on activities and quality of life is high and deserves further investigation. Survey results underscore the need for therapeutic approaches that impact both muscle function and quality of life.