Title |
Clinical Follow‐Up for Duchenne Muscular Dystrophy Newborn Screening: A Proposal
|
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Published in |
Muscle & Nerve, June 2016
|
DOI | 10.1002/mus.25185 |
Pubmed ID | |
Authors |
Jennifer M Kwon, Hoda Z Abdel-Hamid, Samiah A Al-Zaidy, Jerry R Mendell, Annie Kennedy, Kathi Kinnett, Valerie A Cwik, Natalie Street, Julie Bolen, John W Day, Anne M Connolly |
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 (SCC) charged with the care of pre-symptomatically 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 newborn screening 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. This article is protected by copyright. All rights reserved. |
X Demographics
Geographical breakdown
Country | Count | As % |
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Argentina | 1 | 100% |
Demographic breakdown
Type | Count | As % |
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Members of the public | 1 | 100% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
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United States | 1 | 2% |
Unknown | 46 | 98% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Student > Master | 7 | 15% |
Researcher | 6 | 13% |
Other | 4 | 9% |
Student > Ph. D. Student | 4 | 9% |
Student > Bachelor | 2 | 4% |
Other | 8 | 17% |
Unknown | 16 | 34% |
Readers by discipline | Count | As % |
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Medicine and Dentistry | 14 | 30% |
Biochemistry, Genetics and Molecular Biology | 3 | 6% |
Nursing and Health Professions | 3 | 6% |
Social Sciences | 3 | 6% |
Computer Science | 2 | 4% |
Other | 5 | 11% |
Unknown | 17 | 36% |