Details:

Alternative Title:
Muscle Nerve
Personal Author:
KWON, JENNIFER M. ; ABDEL-HAMID, HODA Z. ; AL-ZAIDY, SAMIAH A. ; MENDELL, JERRY R. ; KENNEDY, ANNIE ; ... More +
KWON, JENNIFER M. ; ABDEL-HAMID, HODA Z. ; AL-ZAIDY, SAMIAH A. ; MENDELL, JERRY R. ; KENNEDY, ANNIE ; KINNETT, KATHI ; CWIK, VALERIE A. ; STREET, NATALIE ; BOLEN, JULIE ; DAY, JOHN W. ; CONNOLLY, ANNE M. Less -
Description:
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.
Subject:
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Article
Clinical
Duchenne Muscular Dystrophy
Female
Follow-up
Follow-Up Studies
Humans
Infant, Newborn
Long-term
Male
Management
Muscular Dystrophy, Duchenne
Neonatal Screening
Newborn Screening
Public Health

Source:
Muscle Nerve. 54(2):186-191.
Pubmed ID:
27170260
Pubmed Central ID:
PMC5437738
Document Type:
Journal Article
Funding:
CC999999/Intramural CDC HHS/United States
Collection(s):
CDC Public Access
Main Document Checksum:
[+]
urn:sha256:8322a9fc1c2062d0f518f20d6dbb1b3e59a3298dc22647a4e9a450199707bd63
File Type:

Supporting Files

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