title: Very high compliance in an expanded MS-MS-based newborn screening program despite written parental consent.
abstract: OBJECTIVE
  In Bavaria, Germany, an expanded MS-MS-based newborn screening program was implemented in 1999. The coverage of new additional conditions and novelty of technology required introduction of written parental consent. Here we evaluated the influence of the consent procedure on compliance by systematic demographic tracking.
  
  
  METHODS
  Comprehensive information was provided for parents, professionals, and the public. Screening notifications were matched with all birth notifications on name and date of birth. Parents of children without screening notification were contacted and counseled.
  
  
  RESULTS
  Between August 1, 1999, and July 31, 2000, 123,284 children eligible for screening were born. Of these, 116,652 were matched successfully. Among 6,632 parents contacted, 2,516 (2%) did not respond. Three thousand thirty-four children were screened but the parents initially refused to participate in tracking. Five hundred ninety-four were screened outside the program. Four hundred eighty-eight untested newborns were identified. Three hundred twenty-five screening failures due to logistic problems were tested subsequently. Screening was definitely refused by the parents of 163 children (0.1% of target population).
  
  
  CONCLUSIONS
  With appropriate information provided and surveillance by tracking, high compliance with newborn screening can be achieved despite a written consent requirement.
authors.affiliation: Public Health Newborn Screening Center of the State of Bavaria, Landesuntersuchungsamt Südbayern, D-85762 Oberschleissheim, Germany. bernhard.liebl@t-online.de
authors.forename: Bernhard
authors.initials: B
authors.lastname: Liebl
authors.forename: Uta
authors.initials: U
authors.lastname: Nennstiel-Ratzel
authors.forename: Rüdiger
authors.initials: R
authors.lastname: von Kries
authors.forename: Ralph
authors.initials: R
authors.lastname: Fingerhut
authors.forename: Bernhard
authors.initials: B
authors.lastname: Olgemöller
authors.forename: Andreas
authors.initials: A
authors.lastname: Zapf
authors.forename: Adelbert A
authors.initials: AA
authors.lastname: Roscher
mesh_terms: D000328:Adult; D005260:Female; D005858:Germany; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D013058:Mass Spectrometry / Q000706:statistics & numerical data*; D008661:Metabolism, Inborn Errors / Q000175:diagnosis*; D015997:Neonatal Screening / Q000706:statistics & numerical data*; D010349:Patient Compliance; D020458:Third-Party Consent