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dc.creatorBerry, Susan A.en
dc.creatorLloyd-Puryear, Michele A.en
dc.creatorWatson, Michael S.en
dc.date.accessioned2011-07-12T18:23:04Zen
dc.date.available2011-07-12T18:23:04Zen
dc.date.created2010-12en
dc.date.issued2010-12en
dc.identifier1530-0366en
dc.identifier10.1097/GIM.0b013e3181fea476en
dc.identifier.bibliographicCitationGenetics in medicine : official journal of the American College of Medical Genetics 2010 Dec; 12(12 Suppl): S267-8en
dc.identifier.urihttp://xr8el9yb8v.search.serialssolutions.com/?version=1.0&url_ver=Z39.88-2004&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&atitle=Long-term+follow-up+of+newborn+screening+patients.&title=Genetics+in+medicine+:+official+journal+of+the+American+College+of+Medical+Genetics&volume=12&issue=12&date=20101200&au=Berry,+Susan+A;+Lloyd-Puryear,+Michele+A;+Watson,+Michael+Sen
dc.identifier.urihttp://dx.doi.org/10.1097/GIM.0b013e3181fea476en
dc.identifier.urihttp://hdl.handle.net/10822/515985en
dc.description.abstractNew technology in newborn screening permits clinicians to approach strategies for defining optimal treatments for newborn-screened conditions. The Health Resources and Services Administration Maternal and Child Health Bureau, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, and the Centers for Disease Control and Prevention have all established initiatives for long-term follow-up assessment of children identified after newborn screening. In October 2008, an inaugural meeting of the National Institute of Child Health and Human Development-sponsored National Coordinating Center Long-Term Follow-Up Data Collection Work Group brought together partners from Health Resources and Services Administration-sponsored Regional Genetics Collaboratives to review pilot projects undertaken to promote systematic long-term follow-up for children with inborn errors of metabolism identified by newborn bloodspot screening. Beginning with these projects, the goal of this meeting was to provide a foundation for national planning for a common data set to be used for long-term follow-up. This supplement summarizes these initial projects.en
dc.formatArticleen
dc.languageengen
dc.source335782en
dc.subjectChildrenen
dc.subjectData Collectionen
dc.subjectDiseaseen
dc.subjectGeneticsen
dc.subjectHealthen
dc.subjectPatientsen
dc.subjectReviewen
dc.subjectTechnologyen
dc.subject.classificationHealth Careen
dc.subject.classificationGenetic Screening / Genetic Testingen
dc.subject.classificationHealth Care for Newborns and Minorsen
dc.titleLong-term follow-up of newborn screening patients.en
dc.provenanceDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National Human Genome Research Instituteen
dc.provenanceDigital citation migrated from OpenText Livelink Discovery Server database named GenETHX to DSpace collection GenETHX hosted by Georgetown Universityen


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