Clinical Follow-Up for Duchenne Muscular Dystrophy Newborn Screening: A Proposal.

Abstract:

: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.

journal_name

Muscle Nerve

journal_title

Muscle & nerve

authors

Kwon JM,Abdel-Hamid HZ,Al-Zaidy SA,Mendell JR,Kennedy A,Kinnett K,Cwik VA,Street N,Bolen J,Day JW,Connolly AM

doi

10.1002/mus.25185

subject

Has Abstract

pub_date

2016-08-01 00:00:00

pages

186-91

issue

2

eissn

0148-639X

issn

1097-4598

journal_volume

54

pub_type

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