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Parental attitudes toward newborn screening for Duchenne/Becker muscular dystrophy and spinal muscular atrophy
Author(s) -
Wood Molly F.,
Hughes Sarah C.,
Hache Lauren P.,
Naylor Edwin W.,
AbdelHamid Hoda Z.,
Barmada M. Michael,
Dobrowolski Steven F.,
Stickler David E.,
Clemens Paula R.
Publication year - 2014
Publication title -
muscle and nerve
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.025
H-Index - 145
eISSN - 1097-4598
pISSN - 0148-639X
DOI - 10.1002/mus.24100
Subject(s) - sma* , spinal muscular atrophy , duchenne muscular dystrophy , medicine , muscular dystrophy , newborn screening , physical therapy , neuromuscular disease , pediatrics , disease , physical medicine and rehabilitation , mathematics , combinatorics
: 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. Muscle Nerve 49 : 822–828, 2014