Research Award Details

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Measuring Priorities and Goals of Children with Duchenne Muscular Dystrophy to Develop a Meaningful Patient Reported Outcome Measure

Grant Recipient: Unni Narayanan, MD

Co-Investigators:
Institution:
Hospital for Sick Children, Toronto
Presentations & Publications:
Publications:
Peer Reviewed
  • Propp R, McAdam L, Davis AM, Salbach NM, Weir S, Encisa C, Narayanan UG. Development and content validation of the Muscular Dystrophy Child Health Index of Life with Disabilities questionnaire for children with Duchenne muscular dystrophy. Developmental Medicine & Child Neurology. 2018 Jul 29.
 
Non-Peer Reviewed
  • Propp R. Development and psychometric evaluation of the Muscular Dystrophy Child Health Index of Life with Disabilities (MDCHILD) questionnaire in children with Duchenne muscular dystrophy (Master’s thesis). University of Toronto; 2017.
 
Posters, Presentations, Abstracts
External – Peer Reviewed
  • Propp R, Buttle S, Weir S, Clarissa E, Davis E, McAdam L, Salbach NM, Narayanan UG. Measuring priorities and goals of children with Duchenne muscular dystrophy to develop a meaningful patient reported outcome measure. Poster presentation at: 14th International Congress of Neuromuscular Diseases; 2016 July; Toronto, Ontario.
  • Propp R, Weir S, Clarissa E, Davis E, McAdam L, Salbach NM, Narayanan UG. Development and sensibility evaluation of the Muscular Dystrophy Child Health Index of Life with Disabilities questionnaire. Forthcoming poster presentation at: 71st Annual Meeting of the American Academy for Cerebral Palsy and Developmental Medicine; 2017 September; Montreal, Quebec.
  • Propp R, Weir S, Clarissa E, Davis E, McAdam L, Salbach NM, Narayanan UG. Development and sensibility evaluation of the muscular dystrophy child health index of life with disabilities questionnaire. Forthcoming poster presentation at: 22nd International Congress of the World Muscle Society; 2017 October; St. Malo, France.
 
Internal (University of Toronto and SickKids) – Non-Peer Reviewed
  • Propp R, Weir S, Clarissa E, Davis E, McAdam L, Salbach NM, Narayanan UG. Development and sensibility evaluation of the Muscular Dystrophy Child Health Index of Life with Disabilities questionnaire. Presentation at: Rehabilitation Sciences Institute Annual Research Day; 2017 May; Toronto, Ontario.
  • Propp R, Weir S, Clarissa E, Davis E, McAdam L, Salbach NM, Narayanan UG. Development and sensibility evaluation of the Muscular Dystrophy Child Health Index of Life with Disabilities questionnaire. Poster presentation at: SickKids Research Institute Scientific Advisory Board Poster Session; 2017 April; Toronto, Ontario.
  • Propp R, Buttle S, Weir S, Clarissa E, Davis E, McAdam L, Salbach NM, Narayanan UG. Measuring meaningful outcomes in Duchenne muscular dystrophy: The protocol and initial evidence. Poster presentation at: Rehabilitation Sciences Institute Annual Research Day; 2016 May; Toronto, Ontario.
Further Funding:
Validation of the Muscular Dystrophy Child Health Index of Life with Disabilities Questionnaire in children with other chronic neuromuscular conditions. Muscular Dystrophy Canada. PI: Narayanan UG. Collaborators: McAdam L, Davis A, Salbach N, Propp R. 45,242.65 CAN. 2017-2018.
  • This grant was to continue the validation of the MDCHILD for children with Duchenne muscular dystrophy and to extend the validation to other neuromuscular conditions including spinal muscular atrophy. This work is currently underway.
Additional Information: