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Title: Designing and implementing sample and data collection for an international genetics study: The Type 1 Diabetes Genetics Consortium (T1DGC)
Authors: Hilner, Joan E.
Perdue, Letitia H.
Sides, Elizabeth G.
Pierce, June J.
Wägner, Ana M. 
Aldrich, Alan
Loth, Amanda
Albret, Lotte
Wagenknecht, Lynne E.
Nierras, Concepcion
Akolkar, Beena
Baskerville, Tracey
Bautista, Nines
Bhatia, Eesh
Bhatia, Vijayalakshmi
Bin Hasan, Kamaruzaman
Bonnici, Francois
Brodnicki, Thomas
Browning, Brian
Cameron, Fergus
Chaichanwatanakul, Katharee
To Cheung, Pik
Colman, Peter
Cotterill, Andrew
Couper, Jenny
Crock, Patricia
Cutfield, Ric
Davis, Tim
Dixon, Paul
Donaghue, Kim
Dowling, Katrina
Drury, Paul
Dye, Sarah
Gellert, Shane
Abdul Ghani, Rohana
Greer, Ristan
Han, Xueyao
Harrison, Len
Homatopoulos, Nick
Ji, Linong
Jones, Tim
Kah Yin, Loke
Azmi Kamaruddin, Nor
Kanga, Uma
Kanungo, Alok
Kaur, Gurvinder
Kek, Betty
Knowles, Simon
Krebs, Jeremy
Kumar, Neeraj
Lee, Yann Jinn
Li, Xiaoying
Liktimaskul, Supawadee
Lloyd, Margaret
Louey, Anthony
Mehra, Narinder
Merriman, Tony
Min, Liu
Morahan, Grant
Moses, Robert
Mraz, Grant
Murphy, Rinki
Nicholson, Ian
Panelo, Araceli
Poh, Perlita
Price, Gareth
Ratnam, Nirubasini
Sanjeevi, Carani
Sedimbi, Saikiran
Shen, Shuixian
Siok Ying, Goh
Tait, Brian
Tandon, Nikhil
Thomas, Allison
Varney, Mike
Weerakulwattana, Praewvarin
Willis, Jinny
Abang Akwo, Elvis
Ampudia-Blasco, Francisco
Argente, Jesus
Avbelj, Magdalena
Babadjanova, Gulja
Badenhoop, Klaus
Battelino, Tadej
Beilhack, Georg
Bergholdt, Regine
Bingley, Polly
Boehm, Bernhard
Bolidson, Jo
Brismar, Kerstin
Brorsson, Caroline
Carlson, Joyce
Castano, Luis
Chandler, Kyla
Cherubini, Valentino
Cinek, Ondrej
UNESCO Clasification: 32 Ciencias médicas
320102 Genética clínica
Keywords: Trial
Issue Date: 2010
Journal: Clinical Trials 
Abstract: 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.
ISSN: 1740-7745
DOI: 10.1177/1740774510373497
Source: Clinical Trials[ISSN 1740-7745],v. 7(1), p. S5-S32 (Agosto 2010)
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