PEDIATRICS SUPPLEMENT FOCUSES ON SPECIALTY CARE FOR PATIENTS WITH DUCHENNE MUSCULAR DYSTROPHY: CHEO RESEARCHERS AMONG GLOBAL TEAM OF AUTHORS
OTTAWA, October 2, 2018 – The past decade has seen tremendous advances in the diagnosis and treatment for boys and men with Duchenne muscular dystrophy (DMD), a life-limiting X-linked recessive disorder. Life expectancy has improved from mid-teens to mid-20s with the use of glucocorticoids, and beyond the third decade with ventilator support and multidisciplinary care. A new supplement published today in the journal Pediatrics “Specialty Care for the Patient with Duchenne Muscular Dystrophy” (Pediatrics, October 2018) aims to raise the standard of care and improve quality of life for those living with the condition.
CHEO Research Institute Senior Scientist and Associate Professor in the Faculty of Medicine, University of Ottawa, Dr. Leanne Ward (along with Dr. David Birnkrant, Case Western Reserve School of Medicine, Cleveland Ohio) is a co-editor on the full issue supplement, resulting from an international collaboration with academicians, clinicians and the United States Centres for Disease Control.
These articles build on the recent DMD care considerations (Lancet Neurology January 2018) through a discussion of the complexities involved in decision-making, the medical controversies, and the future directions for research, all of which vary by subspecialty. Themes include the need for a more anticipatory approach to diagnosis and therapeutic intervention across specialties; the need to define and disseminate best practices for multidisciplinary care, including primary care and emergency medical management; and the need to couple prolonged survival with better patient quality of life, prompting a greater emphasis on psychosocial issues and transitions of care across the lifespan.
In addition, Dr. Ward and fellow CHEO Researchers Dr. Hugh McMillan and Dr. Stasia Hadjiyannakis have contributed to two manuscripts within the Pediatrics Supplement, entitled “Bone Health and Osteoporosis Management of the Patient with Duchenne Muscular Dystrophy” and “Obesity and Endocrine Management of the Patient With Duchenne Muscular Dystrophy”.
The supplement aims to raise the standard of care and improve quality of life for those living with the condition. These articles build on the recent DMD care considerations (Lancet Neurology January 2018) through a discussion of the complexities involved in decision-making, the medical controversies, and the future directions for research, all of which vary by subspecialty.
The full supplement can be accessed here.
About the CHEO Research Institute
The CHEO Research Institute coordinates the research activities of CHEO and is affiliated with the University of Ottawa. Its three programs of research are molecular biomedicine, health information technology, and evidence to practice research. Key themes include cancer, diabetes, obesity, mental health, emergency medicine, musculoskeletal health, electronic health information and privacy, and genetics of rare disease. The CHEO Research Institute makes discoveries today for healthier kids tomorrow. For more information, visit www.cheori.org About the American Academy of Pediatrics
The American Academy of Pediatrics is an organization of 67,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults. For more information, visit www.aap.org and follow us on Twitter @AmerAcadPeds
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