Exploring the Role of Telemedicine in Duchenne Muscular Dystrophy: Benefits and Challenges
- PMID: 40971868
- PMCID: PMC12495364
- DOI: 10.2196/77698
Exploring the Role of Telemedicine in Duchenne Muscular Dystrophy: Benefits and Challenges
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.
Keywords: Duchenne muscular dystrophy; digital medicine; eHealth; neuromuscular disorders; telemedicine.
©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. Originally published in JMIR Formative Research (https://formative.jmir.org), 19.09.2025.
Conflict of interest statement
Conflicts of Interest: None declared.
Figures
References
-
- Birnkrant DJ, Bushby K, Bann CM, Apkon SD, Blackwell A, Brumbaugh D, Case LE, Clemens PR, Hadjiyannakis S, Pandya S, Street N, Tomezsko J, Wagner KR, Ward LM, Weber DR. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management. The Lancet Neurology. 2018 Mar;17(3):251–267. doi: 10.1016/s1474-4422(18)30024-3. - DOI - PMC - PubMed
-
- Birnkrant DJ, Bushby K, Bann CM, Alman BA, Apkon SD, Blackwell A, Case LE, Cripe L, Hadjiyannakis S, Olson AK, Sheehan DW, Bolen J, Weber DR, Ward LM. Diagnosis and management of Duchenne muscular dystrophy, part 2: respiratory, cardiac, bone health, and orthopaedic management. The Lancet Neurology. 2018 Apr;17(4):347–361. doi: 10.1016/s1474-4422(18)30025-5. - DOI - PMC - PubMed
-
- Birnkrant DJ, Bushby K, Bann CM, Apkon SD, Blackwell A, Colvin MK, Cripe L, Herron AR, Kennedy A, Kinnett K, Naprawa J, Noritz G, Poysky J, Street N, Trout CJ, Weber DR, Ward LM, DMD Care Considerations Working Group Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan. Lancet Neurol. 2018 May;17(5):445–455. doi: 10.1016/S1474-4422(18)30026-7. https://europepmc.org/abstract/MED/29398641 S1474-4422(18)30026-7 - DOI - PMC - PubMed
-
- Wasilewska E, Małgorzewicz S, Sobierajska-Rek A, Jabłońska-Brudło J, Górska Lucyna, Śledzińska K, Bautembach-Minkowska J, Wierzba J. Transition from childhood to adulthood in patients with Duchenne muscular dystrophy. Medicina (Kaunas) 2020 Aug 24;56(9):426. doi: 10.3390/medicina56090426. https://www.mdpi.com/resolver?pii=medicina56090426 medicina56090426 - DOI - PMC - PubMed
MeSH terms
LinkOut - more resources
Full Text Sources
Medical
Research Materials
