title: Parental attitudes toward newborn screening for Duchenne/Becker muscular dystrophy and spinal muscular atrophy.
abstract: BACKGROUND
  Disease inclusion in the newborn screening (NBS) panel should consider the opinions of those most affected by the outcome of screening. We assessed the level and factors that affect parent attitudes regarding NBS panel inclusion of Duchenne muscular dystrophy (DMD), Becker muscular dystrophy (BMD), and spinal muscular atrophy (SMA).
  
  
  METHODS
  The attitudes toward NBS for DMD, BMD, and SMA were surveyed and compared for 2 categories of parents, those with children affected with DMD, BMD, or SMA and expectant parents unselected for known family medical history.
  
  
  RESULTS
  The level of support for NBS for DMD, BMD, and SMA was 95.9% among parents of children with DMD, BMD, or SMA and 92.6% among expectant parents.
  
  
  CONCLUSIONS
  There was strong support for NBS for DMD, BMD, and SMA in both groups of parents. Given advances in diagnostics and promising therapeutic approaches, discussion of inclusion in NBS should continue.
authors.affiliation: Department of Neurology, University of Pittsburgh, Pittsburgh, Pennsylvania, USA.
authors.forename: Molly F
authors.initials: MF
authors.lastname: Wood
authors.forename: Sarah C
authors.initials: SC
authors.lastname: Hughes
authors.forename: Lauren P
authors.initials: LP
authors.lastname: Hache
authors.forename: Edwin W
authors.initials: EW
authors.lastname: Naylor
authors.forename: Hoda Z
authors.initials: HZ
authors.lastname: Abdel-Hamid
authors.forename: M Michael
authors.initials: MM
authors.lastname: Barmada
authors.forename: Steven F
authors.initials: SF
authors.lastname: Dobrowolski
authors.forename: David E
authors.initials: DE
authors.lastname: Stickler
authors.forename: Paula R
authors.initials: PR
authors.lastname: Clemens
mesh_terms: D000328:Adult; D001007:Anxiety / Q000523:psychology; D001294:Attitude to Health; D015331:Cohort Studies; D042241:Early Diagnosis; D004644:Emotions; D005260:Female; D006306:Health Surveys; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D020388:Muscular Dystrophy, Duchenne / Q000175:diagnosis*; D015997:Neonatal Screening / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D014897:Spinal Muscular Atrophies of Childhood / Q000175:diagnosis*; D011795:Surveys and Questionnaires
keywords: Becker muscular dystrophy; Duchenne muscular dystrophy; newborn screening; parental attitudes; public health policy; spinal muscular atrophy