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Wasilewska E, Wasilewski A, Onofri A, Wasilewski J, Sabiniewicz D, Sobierajska-Rek A, Meyer-Szary J, Śledzińska K, Wierzba J, Niedoszytko M, Małgorzewicz S
Exploring the Role of Telemedicine in Duchenne Muscular Dystrophy: Benefits and Challenges
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Exploring the Role of Telemedicine in Duchenne Muscular Dystrophy: Benefits and Challenges
Eliza Wasilewska;
Andrzej Wasilewski;
Alessandro Onofri;
Jan Wasilewski;
Dominika Sabiniewicz;
Agnieszka Sobierajska-Rek;
Jarosław Meyer-Szary;
Karolina Śledzińska;
Jolanta Wierzba;
Marek Niedoszytko;
Sylwia Małgorzewicz
ABSTRACT
Duchenne muscular dystrophy (DMD) is the most frequent, progressive disease caused by a genetic defect that leads to the production of a non-functional form of dystrophin leading to premature death.
Ways to improve, adapt, and facilitate the care of people with DMD are still being explored.
This proposal, developed by an Accredited Duchenne Center (ADC), aims to present current telemedicine options specifically tailored for patients with DMD and to discuss the advantages and limitations of these approaches across various healthcare domains. As one of the first centers in the country to implement such an approach, the ADC provides targeted home-based care using digital platforms and telemedicine tools.
Additionally, we explore the potential of telemedicine to support different types of remote communication, including provider-to-provider, patient/caregiver-to-provider, and patient/caregiver-to-patient/caregiver interactions. This model has the potential to significantly enhance access to specialized care and improve continuity and quality of life for those living with DMD.
Citation
Please cite as:
Wasilewska E, Wasilewski A, Onofri A, Wasilewski J, Sabiniewicz D, Sobierajska-Rek A, Meyer-Szary J, Śledzińska K, Wierzba J, Niedoszytko M, Małgorzewicz S
Exploring the Role of Telemedicine in Duchenne Muscular Dystrophy: Benefits and Challenges