Dataset Information

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.

SUBMITTER: Oster-Granite ML

PROVIDER: S-EPMC3171614 | biostudies-literature | 2011 Sep-Oct

REPOSITORIES: biostudies-literature

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Down syndrome: national conference on patient registries, research databases, and biobanks.

Oster-Granite Mary Lou ML Parisi Melissa A MA Abbeduto Leonard L Berlin Dorit S DS Bodine Cathy C Bynum Dana D Capone George G Collier Elaine E Hall Dan D Kaeser Lisa L Kaufmann Petra P Krischer Jeffrey J Livingston Michelle M McCabe Linda L LL Pace Jill J Pfenninger Karl K Rasmussen Sonja A SA Reeves Roger H RH Rubinstein Yaffa Y Sherman Stephanie S Terry Sharon F SF Whitten Michelle Sie MS Williams Stephen S McCabe Edward R B ER Maddox Yvonne T YT

Molecular genetics and metabolism 20110713 1-2

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 (Center ...[more]

PMID: 21835664

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Dataset Information

Down syndrome: national conference on patient registries, research databases, and biobanks.

Publications

Down syndrome: national conference on patient registries, research databases, and biobanks.

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