title: Feasibility of neonatal dried blood spot retrieval amid evolving state policies (2009-2010): a Children's Oncology Group study.
abstract: Dried blood spots (DBS) are collected uniformly from US newborns to test for metabolic and other disorders. Because evidence exists for prenatal origins of some diseases, DBS may provide unique prenatal exposure records. Some states retain residual DBS and permit their use in aetiological studies. The primary study aim was to assess the feasibility of obtaining residual DBS from state newborn screening programmes for paediatric and adolescent cancer patients nationwide with parental/subject consent/assent. Families of leukaemia and lymphoma patients aged ≤21 years diagnosed from 1998 to 2007 at randomly selected Children's Oncology Group institutions across the US were questioned (n = 947). Parents/guardians and patients aged ≥18 years were asked to release DBS to investigators in spring 2009. DBS were then requested from states. Overall, 299 families (32%) released DBS. Consenting/assenting patients were born in 39 US states and 46 DBS were obtained from five states; 124 DBS were unobtainable because patients were born prior to dates of state retention. State policies are rapidly evolving and there is ongoing discussion regarding DBS storage and secondary research uses. Currently, population-based DBS studies can be conducted in a limited number of states; fortunately, many have large populations to provide reasonably sized paediatric subject groups.
authors: Division of Pediatric Epidemiology and Clinical Research, Department of Pediatrics, University of Minnesota, Minneapolis, 55455, USA.
authors: Amy M
authors: AM
authors: Linabery
authors: Megan E
authors: ME
authors: Slater
authors: Logan G
authors: LG
authors: Spector
authors: Andrew F
authors: AF
authors: Olshan
authors: Susan K
authors: SK
authors: Stork
authors: Michelle A
authors: MA
authors: Roesler
authors: Gregory H
authors: GH
authors: Reaman
authors: Julie A
authors: JA
authors: Ross
mesh_terms: D000293:Adolescent; D001800:Blood Specimen Collection; D002648:Child; D002675:Child, Preschool; D005240:Feasibility Studies; D020022:Genetic Predisposition to Disease / Q000235:genetics*; D006291:Health Policy / Q000331:legislation & jurisprudence*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007258:Informed Consent / Q000331:legislation & jurisprudence*; D007938:Leukemia / Q000175:diagnosis / Q000235:genetics; D008223:Lymphoma / Q000175:diagnosis / Q000235:genetics; D008495:Medical Oncology; D015997:Neonatal Screening / Q000331:legislation & jurisprudence*; D010290:Parents / Q000523:psychology; D013221:State Health Plans; D014178:Translocation, Genetic; D014481:United States; D055815:Young Adult