Journal article
Developing a public health-tracking system for follow-up of newborn screening metabolic conditions: a four-state pilot project structure and initial findings
Genetics in medicine, Vol.16(6), pp.484-490
06/2014
DOI: 10.1038/gim.2013.177
PMCID: PMC4881836
PMID: 24310309
Abstract
The aim of this study was to describe the methods, cases, and initial results of a pilot project using existing public health data collection programs (birth defect surveillance or newborn screening) to conduct long-term follow-up of children with metabolic disorders.
California, Iowa, New York, and Utah expanded birth defect surveillance or newborn screening programs to collect long-term follow-up data on 19 metabolic disorders. Data elements to monitor health status and services delivered were identified, and record abstraction and data linkages were conducted. Children were followed up through to the age of 3 years.
A total of 261 metabolic cases were diagnosed in 1,343,696 live births (19.4 cases/100,000; 95% confidence interval = 17.1-21.8). Four deaths were identified. Children with fatty acid oxidation disorders had a higher percentage of health service encounters compared with children with other disorders of at least one health service encounter (hospitalization, emergency room, metabolic clinic, genetic service provider, or social worker) except for hospitalizations; children with organic acid disorders had a higher percentage of at least one hospitalization during their third year of life than children with other disorders.
Existing public health data programs can be leveraged to conduct population-based newborn screening long-term follow-up. This approach is flexible according to state needs and resources. These data will enable the states in assessing health burden, assuring access to services, and supporting policy development.
Details
- Title: Subtitle
- Developing a public health-tracking system for follow-up of newborn screening metabolic conditions: a four-state pilot project structure and initial findings
- Creators
- Cynthia F Hinton - Centers for Disease Control and Prevention, Atlanta, Georgia, USACara T Mai - Centers for Disease Control and Prevention, Atlanta, Georgia, USASarah K Nabukera - Social and Scientific Systems, Silver Spring, Maryland, USALorenzo D Botto - Division of Medical Genetics, Department of Pediatrics, University of Utah, Salt Lake City, Utah, USALisa Feuchtbaum - Genetic Disease Screening Program, California Department of Public Health, Sacramento, California, USAPaul A Romitti - University of Iowa, Iowa City, Iowa, USAYing Wang - New York State Department of Health, Albany, New York, USAKimberly Noble Piper - Iowa Department of Public Health, Des Moines, Iowa, USARichard S Olney - Centers for Disease Control and Prevention, Atlanta, Georgia, USA
- Resource Type
- Journal article
- Publication Details
- Genetics in medicine, Vol.16(6), pp.484-490
- Publisher
- United States
- DOI
- 10.1038/gim.2013.177
- PMID
- 24310309
- PMCID
- PMC4881836
- ISSN
- 1098-3600
- eISSN
- 1530-0366
- Grant note
- CC999999 / Intramural CDC HHS P30 ES005605 / NIEHS NIH HHS
- Language
- English
- Date published
- 06/2014
- Academic Unit
- Epidemiology; Biostatistics
- Record Identifier
- 9983996068602771
Metrics
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