Research Award Details

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Assessing Outcomes in Childrens with Neuromuscular Disease

Grant Recipient: Michael Vitale, MD, MPH

Co-Investigators: David Roye, MD, Joshua Hyman, MD, Frances Lee, PhD, and Debra Krasinski, PhD,PT
Institution:
Childrens Hospital of New York
Presentations & Publications:
Presentations: 1. Matsumoto H, Clayton-Krasinski DA, Klinge SA, Gomez JA, Booker WA, Colacchio ND, Roye DP, Vitale MG, Hyman JE. Development and Initial Validation of the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND). The SICOT 2011 XXV Triennial World Congress. Prague, Czech republic September 6-9, 2011 2. Matsumoto H, Corona J, Vitale MG, Clayton-Krasinski D, Gomez JA, Hyman JE, Roye DP. Impact on personal time in parents of children with neuromuscular disease. American Academy of Pediatrics 2009 National Conference and Exhibition. Washington, DC, October 17-20, 2009. 3. Vitale MG, Matsumoto H, Clayton-Krasinski D, Gomez JA, Hyman JE. Impact on Personal Time in Parents of Children with Neuromuscular Disease. 122nd Annual meeting of the American Orthopaedic Association. Bonita Springs, Florida. June 10–13, 2009. 4. Vitale MG, Matsumoto H, Clayton-Krasinski D, Gomez JA, Hyman JE. Impact on Personal Time in Parents of Children with Neuromuscular Disease. 2009 Pediatric Orthopaedic Society of North America Annual Meeting. Boston MA. April 30–May 2, 2009. 5. Roye DP,Vitale MG, Matsumoto H, Clayton-Krasinski D, Gomez JA, Hyman JE. Impact on personal time in parents of children with neuromuscular disease. European Pediatric Orthopaedic Society 28th Annual Meeting, Lisbon, Portugal. April 1-4, 2009. 6. Roye DP, Vitale MG, Matsumoto H, Clayton-Krasinski D, Klinge SA, Hyman JE. Development and initial validation of the neuromuscular disease caregiver impact questionnaire (Neurociq). European Pediatric Orthopaedic Society 28th Annual Meeting, Lisbon, Portugal. April 1-4, 2009. 7. Klinge SA, Vitale MG, Matsumoto H, Clayton-Krasinski D, Avendano J, Hyman He, Roye DP. Development and initial validation of the neuromuscular disease caregiver-administered rapid evaluation (md-care). American Academy of Pediatrics 2008 National Conference and Exhibition. Boston, MA, October 11-14, 2008. 8. Vitale MG, Matsumoto H, , Clayton-Krasinski D, Hyman JE, Klinge SA, Gomez JA, Avendano J, Roye DP. Quantifying the ‘burden of care’ for parents with children with neuromuscular disease. American Academy for Cerebral Palsy & Developmental Medicine 62nd Annual Meeting, Atlanta, GA, USA. September 17-20, 2008. 9. Vitale MG, Klinge SA, Matsumoto H, Clayton-Krasinski D, Hyman JE, Gomez JA, Avendano J Roye DP. A rapid comprehensive quality of life assessment in children with neuromuscular disease. American Academy for Cerebral Palsy & Developmental Medicine 62nd Annual Meeting, Atlanta, GA, USA. September 17-20, 2008. Publications: 1. Matsumoto H, Krasinski DA, Klinge SA, Gomez JA, Booker WA, Hyman JE, Roye DP, Vitale MG. Development and Initial Validation of the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND). J Pediatr Orthop. 2011;31:284-92. PMID:21415688 2. Roye DP,Vitale MG, Matsumoto H, Clayton-Krasinski D, Gomez JA, Hyman JE. Impact on personal time in parents of children with neuromuscular disease. Journal of Child Orthopaedics. 2009:3;S14-15. 3. Roye DP, Vitale MG, Matsumoto H, Clayton-Krasinski D, Klinge SA, Hyman JE. Development and initial validation of the neuromuscular disease caregiver impact questionnaire (Neurociq). Journal of Child Orthopaedics. 2009;3: S 41. 4. Vitale MG, Matsumoto H, , Clayton-Krasinski D, Hyman JE, Klinge SA, Gomez JA, Avendano J, Roye DP. Quantifying the ‘burden of care’ for parents with children with neuromuscular disease. Developmental Medicine & Child Neurology. 2008:50:S21. 5. Vitale MG, Klinge SA, Matsumoto H, Clayton-Krasinski D, Hyman JE, Gomez JA, Avendano J Roye DP. A rapid comprehensive quality of life assessment in children with neuromuscular disease. Developmental Medicine & Child Neurology. 2008:50:S73.
Further Funding:
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