【期刊推荐】2019+共识建议:先天性和儿童时期发病的1型强直性肌营养不良
点击下载本资源Rewien: Open Access” presents an invaluable resource for healthcare providers specializing in the care of children and adults with congenital and childhood-onset myotonic dystrophy type 1 (DM1). This comprehensive guide, authored by an esteemed group of international clinicians with extensive experience in the field, offers consensus-based care recommendations that are sorely needed for this underserved patient population.
Myotonic dystrophy type 1 is a complex, multisystemic disorder that presents with a wide range of disabilities and significantly impacts the lifespan and quality of life of those affected. The variability in age of onset, from congenital to childhood or adulthood, adds another layer of complexity to the management of this condition. Until now, there has been a lack of standardized care recommendations for healthcare providers to follow, resulting in a potential for variability in patient care and outcomes.
The authors meticulously developed these recommendations using a two-step methodology that combines elements of the single text procedure and nominal group technique. This approach ensures that the recommendations are not only evidence-based but also reflect a collaborative and consensus-driven approach to patient care.
The care recommendations outlined in this text cover a broad spectrum of needs for individuals with DM1, including monitoring and interventions aimed at improving lifespan and quality of life. These recommendations are intended to standardize care, ensuring that all patients with myotonic dystrophy receive the best possible management, regardless of their geographic location or the specific healthcare setting in which they are treated.
The open-access nature of this publication is particularly commendable, as it allows for these critical recommendations to be widely accessible to healthcare providers around the world. This ensures that the knowledge gained from this consensus process can be implemented globally, potentially improving the lives of countless individuals with DM1.
In summary, “Rewien: Open Access” is an essential read for all healthcare professionals involved in the care of patients with myotonic dystrophy. It provides much-needed guidance and serves as a cornerstone in the effort to improve the standardized care of this complex disorder. I highly recommend this book to any reader looking to expand their knowledge and improve their practice in the field of neuromuscular disorders.