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Structures for clinical follow‐up: Newborn screening
Author(s) -
Howell R. Rodney,
Engelson Gilian
Publication year - 2007
Publication title -
journal of inherited metabolic disease
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.462
H-Index - 102
eISSN - 1573-2665
pISSN - 0141-8955
DOI - 10.1007/s10545-007-0674-z
Subject(s) - newborn screening , intensive care medicine , medicine , consistency (knowledge bases) , psychological intervention , clinical practice , health care , disease , natural history , pediatrics , family medicine , nursing , computer science , pathology , artificial intelligence , economics , economic growth
Summary Clinical follow‐up of children identified by newborn screening is critical in ensuring that the short‐term and long‐term needs of the newborn infant are managed. Within the United States, one of the biggest challenges in the newborn screening programme is clinical follow‐up, and there still remains wide variation in practice patterns among states on how infants are followed up. In addition, there is lack of consistency in the treatment and diagnostic protocols used by health care providers. There is growing interest in the establishment of a systematic process for follow‐up and for the development of a nationwide infrastructure that will ensure that all children will be provided consistent and effective treatment in a timely manner. Within this framework of optimal diagnosis and therapy, there must also be opportunities to study the natural history of these conditions, to monitor short‐ and long‐term health outcomes, to assist with policy decision‐making, to validate the effectiveness of screening, to define the clinical spectrum of the diseases, and to provide opportunities for the advancement of novel therapeutic interventions and screening/diagnostic technologies. It will only be through the development of a structured clinical follow‐up system that we will be able to make certain these newborn infants are provided the most appropriate treatment for their disease variants and allow researchers to make more rapid advances in improving the clinical management of these conditions.