Long-term follow-up after diagnosis resulting from newborn screening: statement of the US Secretary of Health and Human Services' Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children.

@article{citeulike:2866458, abstract = {The US Secretary of Health and Human Services' Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children provides guidance to reduce the morbidity and mortality associated with heritable disorders, with a special emphasis on those conditions detectable through newborn screening. Although long-term follow-up is necessary to maximize the benefit of diagnosis through newborn screening, such care is variable and inconsistent. To begin to improve long-term follow-up, the Advisory Committee has identified its key features, including the assurance and provision of quality chronic disease management, condition-specific treatment, and age-appropriate preventive care throughout the lifespan of affected individuals. There are four components central to achieving long-term follow-up: care coordination through a medical home, evidence-based treatment, continuous quality improvement, and new knowledge discovery.}, address = {Department of Pediatrics, Duke University, Durham, North Carolina, USA. alex.kemper@duke.edu}, author = {Kemper, A. R. and Boyle, C. A. and Aceves, J. and Dougherty, D. and Figge, J. and Fisch, J. L. and Hinman, A. R. and Greene, C. L. and Kus, C. A. and Miller, J. and Robertson, D. and Therrell, B. and Lloyd-Puryear, M. and van Dyck, P. C. and Howell, R. R. }, citeulike-article-id = {2866458}, doi = {10.1097/GIM.0b013e31816b64f9}, issn = {1530-0366}, journal = {Genetics in medicine : official journal of the American College of Medical Genetics}, keywords = {advisory, genetic-testing, newborn-screening}, month = {April}, number = {4}, pages = {259--261}, posted-at = {2008-06-05 18:01:34}, priority = {2}, title = {Long-term follow-up after diagnosis resulting from newborn screening: statement of the US Secretary of Health and Human Services' Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children.}, url = {http://dx.doi.org/10.1097/GIM.0b013e31816b64f9}, volume = {10}, year = {2008} }

TY - JOUR ID - citeulike:2866458 L3 - citeulike-article-id:2866458 TI - Long-term follow-up after diagnosis resulting from newborn screening: statement of the US Secretary of Health and Human Services' Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children. JF - Genetics in medicine : official journal of the American College of Medical Genetics VL - 10 IS - 4 SP - 259 EP - 261 AD - Department of Pediatrics, Duke University, Durham, North Carolina, USA. alex.kemper@duke.edu SN - 1530-0366 N2 - The US Secretary of Health and Human Services' Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children provides guidance to reduce the morbidity and mortality associated with heritable disorders, with a special emphasis on those conditions detectable through newborn screening. Although long-term follow-up is necessary to maximize the benefit of diagnosis through newborn screening, such care is variable and inconsistent. To begin to improve long-term follow-up, the Advisory Committee has identified its key features, including the assurance and provision of quality chronic disease management, condition-specific treatment, and age-appropriate preventive care throughout the lifespan of affected individuals. There are four components central to achieving long-term follow-up: care coordination through a medical home, evidence-based treatment, continuous quality improvement, and new knowledge discovery. KW - advisory KW - genetic-testing KW - newborn-screening AU - Kemper, AR AU - Boyle, CA AU - Aceves, J AU - Dougherty, D AU - Figge, J AU - Fisch, JL AU - Hinman, AR AU - Greene, CL AU - Kus, CA AU - Miller, J AU - Robertson, D AU - Therrell, B AU - Lloyd-Puryear, M AU - van Dyck, PC AU - Howell, RR PY - 2008/04// UR - http://dx.doi.org/10.1097/GIM.0b013e31816b64f9 ER -