title: Down syndrome: issues to consider in a national registry, research database and biobank.
abstract: As the quality of life for individuals with Down syndrome continues to improve due to anticipatory healthcare, early intervention, mainstreaming in schools, and increased expectations, the lack of basic information regarding individuals with Down syndrome is being recognized, and the need to facilitate research through a national registry, research database and biobank is being discussed. We believe that there should not be ownership of the samples and information, but instead prefer stewardship of the samples and information to benefit the participants who provided them. We endorse a model with data and sample managers and a research review board to interface between the investigators and participants. Information and samples would be coded, and only a few data managers would know the relationship between the codes and identifying information. Research results once published should be included in an online newsletter. If appropriate, individual results should be shared with participants. A Down syndrome registry, research database and biobank should be accountable to participants, families, medical care providers, government, and funding sources.
authors.affiliation: Linda Crnic Institute for Down Syndrome, University of Colorado School of Medicine, Aurora, Colorado 80045, USA. linda.mccabe@ucdenver.edu
authors.forename: Linda L
authors.initials: LL
authors.lastname: McCabe
authors.forename: Edward R B
authors.initials: ER
authors.lastname: McCabe
mesh_terms: D018070:Biological Specimen Banks / Q000706:statistics & numerical data*; D035843:Biomedical Research / Q000331:legislation & jurisprudence / Q000706:statistics & numerical data*; D019992:Databases as Topic / Q000331:legislation & jurisprudence / Q000706:statistics & numerical data*; D004314:Down Syndrome / Q000453:epidemiology*; D006801:Humans; D012042:Registries / Q000706:statistics & numerical data*; D014481:United States / Q000453:epidemiology