Projects<\/h4><\/div>- CHOP<\/a><\/li>\n
- Gait Analysis RCT<\/a><\/li>\n
- GOAL™ Project<\/a><\/li>\n
- GOAL-LD™ Project<\/a><\/li>\n
- MDCHILD™ Project<\/a><\/li>\n
- PROOF™ Project<\/a><\/li>\n
- Pediatric Femoral Fracture Registry Project<\/a><\/li>\n
- CPRN Registry<\/a><\/li>\n<\/ul><\/div><\/div><\/div><\/div><\/div><\/div><\/div>
MDCHILD™ Project<\/h1><\/h1><\/div><\/div><\/div><\/p>\nMuscular Dystrophy Child Health Index of Life with Disabilities (MDCHILD™) Project
\n<\/strong><\/h4>\n<\/div>Summary<\/strong>
\nOf all neuromuscular disorders, DMD is the most common and severe, affecting between 1 in 3,500 – 6,000 male births. It is a progressive disease that starts with mild muscle weakness, but rapidly leads to total loss of mobility, respiratory and cardiac complications, and ultimately a premature death. There is currently no cure for DMD and, therefore, children undergo a multitude of intensive interventions aimed at improving their health, prolonging their life, and increasing their quality of life. These interventions span many areas of management, including orthoses (braces) and splints, corticosteroids, wheel\/powerchairs for mobility, cardiac medications, orthopaedic surgery for joint contractures and spinal deformity, medications and therapy for bone health and psychosocial issues, pulmonary interventions including nocturnal and daytime ventilation, and gastrointestinal interventions to address swallowing difficulties and nutrition. These interventions are resource intensive and a financial burden for the children, their families, and society as a whole.<\/p>\nThere are currently several HRQL measures that have been developed and\/or validated for children with DMD; however, each has certain shortcomings.\u00a0 The purpose of this national multi-center project is to develop and validate a comprehensive outcome measure of patient priorities and goals for children with Duchenne muscular dystrophy (DMD), which examines the full breadth of areas that are important to their life. The outcome measure developed in this proposed study will enable more meaningful measurement of treatment effectiveness in clinical trials and cohort studies for this population. Learn more about MDCHILD™<\/span><\/a>.<\/p>\n<\/div>
- CHOP<\/a><\/li>\n
- Gait Analysis RCT<\/a><\/li>\n
- GOAL™ Project<\/a><\/li>\n
- GOAL-LD™ Project<\/a><\/li>\n
- MDCHILD™ Project<\/a><\/li>\n
- PROOF™ Project<\/a><\/li>\n
- Pediatric Femoral Fracture Registry Project<\/a><\/li>\n
- CPRN Registry<\/a><\/li>\n<\/ul><\/div><\/div>
<\/div><\/div><\/div><\/div><\/div>MDCHILD™ Project<\/h1><\/h1><\/div>
<\/div><\/div><\/p>\nMuscular Dystrophy Child Health Index of Life with Disabilities (MDCHILD™) Project
\n<\/strong><\/h4>\n<\/div>Summary<\/strong>
\nOf all neuromuscular disorders, DMD is the most common and severe, affecting between 1 in 3,500 – 6,000 male births. It is a progressive disease that starts with mild muscle weakness, but rapidly leads to total loss of mobility, respiratory and cardiac complications, and ultimately a premature death. There is currently no cure for DMD and, therefore, children undergo a multitude of intensive interventions aimed at improving their health, prolonging their life, and increasing their quality of life. These interventions span many areas of management, including orthoses (braces) and splints, corticosteroids, wheel\/powerchairs for mobility, cardiac medications, orthopaedic surgery for joint contractures and spinal deformity, medications and therapy for bone health and psychosocial issues, pulmonary interventions including nocturnal and daytime ventilation, and gastrointestinal interventions to address swallowing difficulties and nutrition. These interventions are resource intensive and a financial burden for the children, their families, and society as a whole.<\/p>\nThere are currently several HRQL measures that have been developed and\/or validated for children with DMD; however, each has certain shortcomings.\u00a0 The purpose of this national multi-center project is to develop and validate a comprehensive outcome measure of patient priorities and goals for children with Duchenne muscular dystrophy (DMD), which examines the full breadth of areas that are important to their life. The outcome measure developed in this proposed study will enable more meaningful measurement of treatment effectiveness in clinical trials and cohort studies for this population. Learn more about MDCHILD™<\/span><\/a>.<\/p>\n<\/div>
- Gait Analysis RCT<\/a><\/li>\n
![\"Muscular](\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/wp-content\/uploads\/sites\/72\/2017\/12\/MDCANADA.jpg\")
![\"POSNA](\"https:\/\/lab.research.sickkids.ca\/pscoreprogram\/wp-content\/uploads\/sites\/72\/2016\/09\/POSNA-e1474250015458.jpg\")
<\/p>\n<\/div>