title: Down syndrome: national conference on patient registries, research databases, and biobanks.
abstract: A December 2010 meeting, "Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks," was jointly sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH) in Bethesda, MD, and the Global Down Syndrome Foundation (GDSF)/Linda Crnic Institute for Down Syndrome based in Denver, CO. Approximately 70 attendees and organizers from various advocacy groups, federal agencies (Centers for Disease Control and Prevention, and various NIH Institutes, Centers, and Offices), members of industry, clinicians, and researchers from various academic institutions were greeted by Drs. Yvonne Maddox, Deputy Director of NICHD, and Edward McCabe, Executive Director of the Linda Crnic Institute for Down Syndrome. They charged the participants to focus on the separate issues of contact registries, research databases, and biobanks through both podium presentations and breakout session discussions. Among the breakout groups for each of the major sessions, participants were asked to generate responses to questions posed by the organizers concerning these three research resources as they related to Down syndrome and then to report back to the group at large with a summary of their discussions. This report represents a synthesis of the discussions and suggested approaches formulated by the group as a whole.
authors.affiliation: Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, MD 20892-7510, USA.
authors.forename: Mary Lou
authors.initials: ML
authors.lastname: Oster-Granite
authors.forename: Melissa A
authors.initials: MA
authors.lastname: Parisi
authors.forename: Leonard
authors.initials: L
authors.lastname: Abbeduto
authors.forename: Dorit S
authors.initials: DS
authors.lastname: Berlin
authors.forename: Cathy
authors.initials: C
authors.lastname: Bodine
authors.forename: Dana
authors.initials: D
authors.lastname: Bynum
authors.forename: George
authors.initials: G
authors.lastname: Capone
authors.forename: Elaine
authors.initials: E
authors.lastname: Collier
authors.forename: Dan
authors.initials: D
authors.lastname: Hall
authors.forename: Lisa
authors.initials: L
authors.lastname: Kaeser
authors.forename: Petra
authors.initials: P
authors.lastname: Kaufmann
authors.forename: Jeffrey
authors.initials: J
authors.lastname: Krischer
authors.forename: Michelle
authors.initials: M
authors.lastname: Livingston
authors.forename: Linda L
authors.initials: LL
authors.lastname: McCabe
authors.forename: Jill
authors.initials: J
authors.lastname: Pace
authors.forename: Karl
authors.initials: K
authors.lastname: Pfenninger
authors.forename: Sonja A
authors.initials: SA
authors.lastname: Rasmussen
authors.forename: Roger H
authors.initials: RH
authors.lastname: Reeves
authors.forename: Yaffa
authors.initials: Y
authors.lastname: Rubinstein
authors.forename: Stephanie
authors.initials: S
authors.lastname: Sherman
authors.forename: Sharon F
authors.initials: SF
authors.lastname: Terry
authors.forename: Michelle Sie
authors.initials: MS
authors.lastname: Whitten
authors.forename: Stephen
authors.initials: S
authors.lastname: Williams
authors.forename: Edward R B
authors.initials: ER
authors.lastname: McCabe
authors.forename: Yvonne T
authors.initials: YT
authors.lastname: Maddox
mesh_terms: D018070:Biological Specimen Banks / Q000706:statistics & numerical data*; D035843:Biomedical Research / Q000706:statistics & numerical data*; D019992:Databases as Topic / Q000706:statistics & numerical data*; D004314:Down Syndrome / Q000453:epidemiology*; D006801:Humans; D012042:Registries / Q000706:statistics & numerical data*; D014481:United States / Q000453:epidemiology