TY - JOUR
T1 - Designing and implementing sample and data collection for an international genetics study
T2 - The Type 1 Diabetes Genetics Consortium (T1DGC)
AU - the T1DGC
AU - Hilner, Joan E.
AU - Perdue, Letitia H.
AU - Sides, Elizabeth G.
AU - Pierce, June J.
AU - Wägner, Ana M.
AU - Aldrich, Alan
AU - Loth, Amanda
AU - Albret, Lotte
AU - Wagenknecht, Lynne E.
AU - Nierras, Concepcion
AU - Akolkar, Beena
AU - Baskerville, Tracey
AU - Bautista, Nines
AU - Bhatia, Eesh
AU - Bhatia, Vijayalakshmi
AU - Bin Hasan, Kamaruzaman
AU - Bonnici, Francois
AU - Brodnicki, Thomas
AU - Browning, Brian
AU - Cameron, Fergus
AU - Chaichanwatanakul, Katharee
AU - To Cheung, Pik
AU - Colman, Peter
AU - Cotterill, Andrew
AU - Couper, Jenny
AU - Crock, Patricia
AU - Cutfield, Ric
AU - Davis, Tim
AU - Dixon, Paul
AU - Donaghue, Kim
AU - Dowling, Katrina
AU - Drury, Paul
AU - Dye, Sarah
AU - Gellert, Shane
AU - Abdul Ghani, Rohana
AU - Greer, Ristan
AU - Han, Xueyao
AU - Harrison, Len
AU - Homatopoulos, Nick
AU - Ji, Linong
AU - Jones, Tim
AU - Kah Yin, Loke
AU - Azmi Kamaruddin, Nor
AU - Kanga, Uma
AU - Kanungo, Alok
AU - Kaur, Gurvinder
AU - Kek, Betty
AU - Knowles, Simon
AU - Krebs, Jeremy
AU - Quattrin, Teresa
N1 - Publisher Copyright:
© The Author(s) 2010.
PY - 2010/8/1
Y1 - 2010/8/1
N2 - Background and Purpose The Type 1 Diabetes Genetics Consortium (T1DGC) is an international project whose primary aims are to: (a) discover genes that modify type 1 diabetes risk; and (b) expand upon the existing genetic resources for type 1 diabetes research. The initial goal was to collect 2500 affected sibling pair (ASP) families worldwide. Methods T1DGC was organized into four regional networks (Asia-Pacific, Europe, North America, and the United Kingdom) and a Coordinating Center. A Steering Committee, with representatives from each network, the Coordinating Center, and the funding organizations, was responsible for T1DGC operations. The Coordinating Center, with regional network representatives, developed study documents and data systems. Each network established laboratories for: DNA extraction and cell line production; human leukocyte antigen genotyping; and autoantibody measurement. Samples were tracked from the point of collection, processed at network laboratories and stored for deposit at National Institute for Diabetes and Digestive and Kidney Diseases (NIDDK) Central Repositories. Phenotypic data were collected and entered into the study database maintained by the Coordinating Center. Results T1DGC achieved its original ASP recruitment goal. In response to research design changes, the T1DGC infrastructure also recruited trios, cases, and controls. Results of genetic analyses have identified many novel regions that affect susceptibility to type 1 diabetes. T1DGC created a resource of data and samples that is accessible to the research community. Limitations Participation in T1DGC was declined by some countries due to study requirements for the processing of samples at network laboratories and/or final deposition of samples in NIDDK Central Repositories. Re-contact of participants was not included in informed consent templates, preventing collection of additional samples for functional studies. Conclusions T1DGC implemented a distributed, regional network structure to reach ASP recruitment targets. The infrastructure proved robust and flexible enough to accommodate additional recruitment. T1DGC has established significant resources that provide a basis for future discovery in the study of type 1 diabetes genetics.
AB - Background and Purpose The Type 1 Diabetes Genetics Consortium (T1DGC) is an international project whose primary aims are to: (a) discover genes that modify type 1 diabetes risk; and (b) expand upon the existing genetic resources for type 1 diabetes research. The initial goal was to collect 2500 affected sibling pair (ASP) families worldwide. Methods T1DGC was organized into four regional networks (Asia-Pacific, Europe, North America, and the United Kingdom) and a Coordinating Center. A Steering Committee, with representatives from each network, the Coordinating Center, and the funding organizations, was responsible for T1DGC operations. The Coordinating Center, with regional network representatives, developed study documents and data systems. Each network established laboratories for: DNA extraction and cell line production; human leukocyte antigen genotyping; and autoantibody measurement. Samples were tracked from the point of collection, processed at network laboratories and stored for deposit at National Institute for Diabetes and Digestive and Kidney Diseases (NIDDK) Central Repositories. Phenotypic data were collected and entered into the study database maintained by the Coordinating Center. Results T1DGC achieved its original ASP recruitment goal. In response to research design changes, the T1DGC infrastructure also recruited trios, cases, and controls. Results of genetic analyses have identified many novel regions that affect susceptibility to type 1 diabetes. T1DGC created a resource of data and samples that is accessible to the research community. Limitations Participation in T1DGC was declined by some countries due to study requirements for the processing of samples at network laboratories and/or final deposition of samples in NIDDK Central Repositories. Re-contact of participants was not included in informed consent templates, preventing collection of additional samples for functional studies. Conclusions T1DGC implemented a distributed, regional network structure to reach ASP recruitment targets. The infrastructure proved robust and flexible enough to accommodate additional recruitment. T1DGC has established significant resources that provide a basis for future discovery in the study of type 1 diabetes genetics.
UR - https://www.scopus.com/pages/publications/79952279467
U2 - 10.1177/1740774510373497
DO - 10.1177/1740774510373497
M3 - Article
C2 - 20603248
AN - SCOPUS:79952279467
SN - 1740-7745
VL - 7
SP - S5-S32
JO - Clinical Trials
JF - Clinical Trials
IS - 1_suppl
ER -