TY - JOUR
T1 - Down syndrome
T2 - National conference on patient registries, research databases, and biobanks
AU - Oster-Granite, Mary Lou
AU - Parisi, Melissa A.
AU - Abbeduto, Leonard J
AU - Berlin, Dorit S.
AU - Bodine, Cathy
AU - Bynum, Dana
AU - Capone, George
AU - Collier, Elaine
AU - Hall, Dan
AU - Kaeser, Lisa
AU - Kaufmann, Petra
AU - Krischer, Jeffrey
AU - Livingston, Michelle
AU - McCabe, Linda L.
AU - Pace, Jill
AU - Pfenninger, Karl
AU - Rasmussen, Sonja A.
AU - Reeves, Roger H.
AU - Rubinstein, Yaffa
AU - Sherman, Stephanie
AU - Terry, Sharon F.
AU - SieWhitten, Michelle
AU - Williams, Stephen
AU - McCabe, Edward R B
AU - Maddox, Yvonne T.
PY - 2011/9
Y1 - 2011/9
N2 - 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.
AB - 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.
KW - Biobank
KW - Database
KW - Down syndrome
KW - Registry
KW - Trisomy 21
UR - http://www.scopus.com/inward/record.url?scp=80052523015&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=80052523015&partnerID=8YFLogxK
U2 - 10.1016/j.ymgme.2011.07.005
DO - 10.1016/j.ymgme.2011.07.005
M3 - Article
C2 - 21835664
AN - SCOPUS:80052523015
VL - 104
SP - 13
EP - 22
JO - Biochemical Medicine and Metabolic Biology
JF - Biochemical Medicine and Metabolic Biology
SN - 1096-7192
IS - 1-2
ER -