A Pilot Survey Study of Adherence to Care Considerations for Duchenne Muscular Dystrophy

Conclusion This study showed adherence to many of the assessments and interventions suggested in the Care Considerations. The areas showing less consistency could be classified as derived from expert opinion with little supporting data. Improvement in the implementation of all aspects of recommended care requires continued study into the health impact of the proposed recommendations and continued advocacy for coverage by agencies. Corresponding Author Kristin Conway, PhD, Department of Epidemiology, College of Public Health, The University of Iowa, Iowa City, Iowa 52240, USA; Telephone: 319-335-4641 Email: kristin-caspers@uiowa.edu Data Availability Statement Data is available upon request. Deborah Fox, MPH, Director, Congenital Malformations Registry Chief, Birth Defects Registry and Surveillance Section (BDRS) New York State Department of Health, Empire State Plaza, Corning Tower, Rm 1203 Albany, NY 12237, Phone 518-402-7950, Fax 518-402-7959, deb.fox@health.ny.gov, www.health.ny.gov/birthdefects Ethics Statement IRB approval was received by the New York State Department of Health Institutional Review Board (IRB number: 03-062/15-0643/15-0644). No identifiers were collected in the questionnaire. The New York State Department of Health de-identified the questionnaires and assigned random IDs for data entry by the Iowa collaborators. Participants were informed of the purpose of study, which is to inform on clinical practice and future care considerations, but posting o...
Source: PLOS Currents Muscular Dystrophy - Category: Neurology Authors: Source Type: research