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Clinical Follow‐Up for Duchenne Muscular Dystrophy Newborn Screening: A Proposal
Author(s) -
Kwon Jennifer M.,
AbdelHamid Hoda Z.,
AlZaidy Samiah A.,
Mendell Jerry R.,
Kennedy Annie,
Kinnett Kathi,
Cwik Valerie A.,
Street Natalie,
Bolen Julie,
Day John W.,
Connolly Anne M.
Publication year - 2016
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.25185
Subject(s) - duchenne muscular dystrophy , newborn screening , medicine , muscular dystrophy , specialty , physical therapy , pediatrics , primary care , family medicine
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 developing clinical guidance to be implemented consistently in specialty care clinics charged with the care of presymptomatically identified newborns referred after DMD‐NBS. We reviewed the existing literature covering patient‐centered clinical follow‐up after NBS, educational material from public health and advocacy sites, and federal recommendations on effective NBS follow‐up. We discussed the review as a group and added our own experience to develop materials suitable for initial parent and primary care provider education. These materials and a series of templates for subspecialist encounters could be used to provide consistent care across centers and serve as the basis for ongoing quality improvement. Muscle Nerve 54 : 186–191, 2016