Journal article
Factors associated with maternal consent for use of residual newborn bloodspots in the National Birth Defects Prevention Study
Birth defects research, Vol.114(7), pp.238-248
02/23/2022
DOI: 10.1002/bdr2.1991
PMID: 35194969
Abstract
We investigated factors associated with maternal consent to use residual newborn dried bloodspots (DBS) in a national case-control study of birth defects.
A subset of sites in the National Birth Defects Prevention Study (NBDPS; 1997-2011) asked participants to provide consent for investigators to retrieve DBS from local newborn screening programs to use for research on risk factors for birth defects. We assessed whether consent differed by factors including maternal age, education, parity, body mass index, language of interview, country of birth, and case-control status.
Of 5,850 mothers of cases and 2,534 mothers of controls, 57% provided consent for the DBS component. Mothers of cases were more likely to participate than mothers of controls (61% vs. 52%), as were mothers who self-reported white race, >12 years of education, and born in the United States.
Retrieval of DBS can be integrated into retrospective studies of neonatal outcomes including birth defects. In NBDPS, participation in the DBS component was moderate and varied by some sociodemographic factors. Further research is needed to better understand families' perspectives on using residual DBS for secondary research. Representative participation is important to reduce the potential for selection bias in future studies using DBS for children's health research.
Details
- Title: Subtitle
- Factors associated with maternal consent for use of residual newborn bloodspots in the National Birth Defects Prevention Study
- Creators
- Eugene C Wong - Department of Epidemiology, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USASarah C Fisher - Birth Defects Registry, New York State Department of Health, Albany, New York, USAMarcia L Feldkamp - Division of Medical Genetics, Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, Utah, USAPaul A Romitti - College of Public Health, The University of Iowa, Iowa City, Iowa, USAEirini Nestoridi - Massachusetts Center for Birth Defects Research and Prevention, Massachusetts Department of Public Health, Boston, Massachusetts, USATania A Desrosiers - Department of Epidemiology, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USANational Birth Defects Prevention Study
- Resource Type
- Journal article
- Publication Details
- Birth defects research, Vol.114(7), pp.238-248
- DOI
- 10.1002/bdr2.1991
- PMID
- 35194969
- NLM abbreviation
- Birth Defects Res
- ISSN
- 2472-1727
- eISSN
- 2472-1727
- Publisher
- Wiley
- Grant note
- U01DD001231 / ACL HHS T32 HD52468 / National Institute of Child Health and Human Development NOFO#DD18-001 / Centers for Disease Control and Prevention (CDC) FOA#DD09-001 / Centers for Disease Control and Prevention (CDC) PA#02081 / Centers for Disease Control and Prevention (CDC) PA#96043 / Centers for Disease Control and Prevention (CDC) FOA#DD13-003 / Centers for Disease Control and Prevention (CDC) U01 DD001223 / NCBDD CDC HHS
- Language
- English
- Date published
- 02/23/2022
- Academic Unit
- Epidemiology; Biostatistics
- Record Identifier
- 9984222739802771
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