Julie Bolen
YOU?
Author Swipe
View article: Measuring quality of life in muscular dystrophy
Measuring quality of life in muscular dystrophy Open
OBJECTIVES: The objectives of this study were to develop a conceptual model of quality of life (QOL) in muscular dystrophies (MDs) and review existing QOL measures for use in the MD population. METHODS: Our model for QOL among individuals …
View article: Fragile X Syndrome-Associated Emergency Department Visits in the United States, 2006–2011
Fragile X Syndrome-Associated Emergency Department Visits in the United States, 2006–2011 Open
Using national data, we examined emergency department (ED) encounters during 2006–2011 for which a diagnosis code for fragile X syndrome (FXS) was present (n = 7,217). Almost half of ED visits coded for FXS resulted in hospitalization, whi…
View article: Gender difference in clinical conditions among hospitalized adults with myotonic dystrophy
Gender difference in clinical conditions among hospitalized adults with myotonic dystrophy Open
Introduction : In this study we examined gender differences in adult hospitalizations with myotonic dystrophy (DM). Methods : From the Nationwide Inpatient Sample (NIS) 2010–2014, we identified 1,891 adult hospitalizations with a DM diagno…
View article: Evaluating Implementation of the Updated Care Considerations for Duchenne Muscular Dystrophy
Evaluating Implementation of the Updated Care Considerations for Duchenne Muscular Dystrophy Open
Care Considerations for Duchenne Muscular Dystrophy were published in 2010. However, little is known about the extent to which these considerations were implemented after publication. With this article, we provide direction on evaluating t…
View article: Muscular Dystrophy Surveillance, Tracking, and Research Network pilot: Population‐based surveillance of major muscular dystrophies at four U.S. sites, 2007–2011
Muscular Dystrophy Surveillance, Tracking, and Research Network pilot: Population‐based surveillance of major muscular dystrophies at four U.S. sites, 2007–2011 Open
Background For 10 years, the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STAR net ) conducted surveillance for Duchenne and Becker muscular dystrophy (DBMD). We piloted expanding surveillance to other MDs that vary …
View article: The Future of Fragile X Syndrome: CDC Stakeholder Meeting Summary
The Future of Fragile X Syndrome: CDC Stakeholder Meeting Summary Open
* Abbreviations:
ASD — : autism spectrum disorder
CDC — : Centers for Disease Control and Prevention
FMR1 — : fragile x mental retardation 1
FMRP — : fragile X mental retardation protein
FXD —…
View article: Clinical Follow-Up for Duchenne Muscular Dystrophy Newborn Screening: A Proposal
Clinical Follow-Up for Duchenne Muscular Dystrophy Newborn Screening: A Proposal Open
New developments in the rapid diagnosis and treatment of boys with Duchenne muscular dystrophy (DMD) have led to growing enthusiasm for instituting DMD newborn screening (NBS) in the United States. Our group has been interested in developi…