Eliza Wasilewska, Andrzej Wasilewski, Alessandro Onofri, Jan Wasilewski, Dominika Sabiniewicz-Ziajka, Agnieszka Sobierajska-Rek, Jarosław Meyer-Szary, Karolina Śledzińska, Jolanta Wierzba, Marek Niedoszytko, Sylwia Małgorzewicz
{"title":"Exploring the Role of Telemedicine in Duchenne Muscular Dystrophy: Benefits and Challenges.","authors":"Eliza Wasilewska, Andrzej Wasilewski, Alessandro Onofri, Jan Wasilewski, Dominika Sabiniewicz-Ziajka, Agnieszka Sobierajska-Rek, Jarosław Meyer-Szary, Karolina Śledzińska, Jolanta Wierzba, Marek Niedoszytko, Sylwia Małgorzewicz","doi":"10.2196/77698","DOIUrl":null,"url":null,"abstract":"<p><p>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.</p>","PeriodicalId":14841,"journal":{"name":"JMIR Formative Research","volume":"9 ","pages":"e77698"},"PeriodicalIF":2.0000,"publicationDate":"2025-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12495364/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"JMIR Formative Research","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.2196/77698","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
引用次数: 0
Abstract
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.