Wasilewska Eliza, Wasilewski Andrzej, Onofri Alessandro, Wasilewski Jan, Sabiniewicz-Ziajka Dominika, Sobierajska-Rek Agnieszka, Meyer-Szary Jarosław, Śledzińska Karolina, Wierzba Jolanta, Niedoszytko Marek, Małgorzewicz Sylwia
Department of Allergology and Pulmonology, University Clinical Center Gdańsk (Accredited Duchenne Center), Medical University of Gdańsk, Gdansk, Poland.
Student Scientific Association of Medical Chemistry and Immunochemistry, Wroclaw Medical University, Wrocław, Poland.
JMIR Form Res. 2025 Sep 19;9:e77698. doi: 10.2196/77698.
Duchenne muscular dystrophy (DMD) is the most frequent, progressive disease caused by a genetic defect that leads to the production of a nonfunctional form of dystrophin, thereby causing premature death. Ways to improve, adapt, and facilitate the care of people with DMD are still being explored. This viewpoint, developed by an accredited Duchenne center, aims to present current telemedicine options specifically tailored for patients with DMD and to discuss the advantages and limitations of these approaches across various health care domains. As one of the first centers in Poland to implement such an approach, the accredited Duchenne center provides targeted home-based care by using digital platforms and telemedicine tools. Additionally, we explore the potential of telemedicine to support different types of remote communication, including provider-to-provider, between patient/caregiver and provider, and between patient/caregiver and patient/caregiver interactions. This model has the potential to significantly enhance access to specialized care and improve the continuity and quality of life for those living with DMD.
杜氏肌营养不良症（DMD）是最常见的进行性疾病，由基因缺陷导致产生无功能形式的抗肌萎缩蛋白，从而导致过早死亡。改善、调整和促进对DMD患者护理的方法仍在探索中。这一由经认可的杜氏中心提出的观点，旨在介绍专门为DMD患者量身定制的当前远程医疗选择，并讨论这些方法在各个医疗领域的优缺点。作为波兰首批实施此类方法的中心之一，经认可的杜氏中心通过使用数字平台和远程医疗工具提供有针对性的居家护理。此外，我们探讨远程医疗支持不同类型远程通信的潜力，包括提供者之间、患者/护理者与提供者之间以及患者/护理者与患者/护理者之间的互动。这种模式有可能显著增加获得专科护理的机会，并改善DMD患者的护理连续性和生活质量。
