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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: Joan E. Hilner
Letitia H. Perdue
Elizabeth G. Sides
June J. Pierce
Ana M. Wägner
Alan Aldrich
Amanda Loth
Lotte Albret
Lynne E. Wagenknecht
Concepcion Nierras
Beena Akolkar
Tracey Baskerville
Nines Bautista
Eesh Bhatia
Vijayalakshmi Bhatia
Kamaruzaman Bin Hasan
Francois Bonnici
Thomas Brodnicki
Brian Browning
Fergus Cameron
Katharee Chaichanwatanakul
Pik To Cheung
Peter Colman
Andrew Cotterill
Jenny Couper
Patricia Crock
Ric Cutfield
Tim Davis
Paul Dixon
Kim Donaghue
Katrina Dowling
Paul Drury
Sarah Dye
Shane Gellert
Rohana Abdul Ghani
Ristan Greer
Xueyao Han
Len Harrison
Nick Homatopoulos
Linong Ji
Tim Jones
Loke Kah Yin
Nor Azmi Kamaruddin
Uma Kanga
Alok Kanungo
Gurvinder Kaur
Betty Kek
Simon Knowles
Jeremy Krebs
Neeraj Kumar
Yann Jinn Lee
Xiaoying Li
Supawadee Liktimaskul
Margaret Lloyd
Amanda Loth
Anthony Louey
Narinder Mehra
Tony Merriman
Liu Min
Grant Morahan
Robert Moses
Grant Mraz
Rinki Murphy
Ian Nicholson
Araceli Panelo
Perlita Poh
Gareth Price
Nirubasini Ratnam
Carani Sanjeevi
Saikiran Sedimbi
Shuixian Shen
Goh Siok Ying
Brian Tait
Nikhil Tandon
Allison Thomas
Mike Varney
Praewvarin Weerakulwattana
Jinny Willis
Elvis Abang Akwo
Lotte Albret
Francisco Ampudia-Blasco
Jesus Argente
Magdalena Avbelj
Gulja Babadjanova
Klaus Badenhoop
Tadej Battelino
Georg Beilhack
Regine Bergholdt
Polly Bingley
Bernhard Boehm
Jo Bolidson
Kerstin Brismar
Caroline Brorsson
Joyce Carlson
Luis Castano
Kyla Chandler
Valentino Cherubini
Ondrej Cinek
University of Alabama at Birmingham
Wake Forest University Health Sciences
Hagedorn Research Institute
Hospital Insular, Las Palmas
Universidad de Las Palmas de Gran Canaria
University of Alaska Anchorage
Walter and Eliza Hall Institute of Medical Research
Juvenile Diabetes Research Foundation International
National Institute of Diabetes and Digestive and Kidney Diseases
Mater Hospital
Institute for Study on Diabetes Foundation
Sanjay Gandhi Postgraduate Institute of Medical Sciences Lucknow
National University of Malaysia Hospital
University of Cape Town
University of Auckland
Royal Children's Hospital, Melbourne
Mahidol University
Queen Mary Hospital Hong Kong
Women’s and Children’s Hospital
John Hunter Children’s Hospital
North Shore Hospital
Fremantle Hospital and Health Service
Diabetes Lifestyle Centre
Children's Hospital At Westmead
Australian Red Cross Blood Service
Auckland Diabetes Centre
Western Australia Institute for Medical Research
Royal Melbourne Hospital
University of Queensland
Peking University
Princess Margaret Hospital for Children
Children's Medical Institute
All India Institute of Medical Sciences, New Delhi
Cuttack Diabetes Research Foundation
Diabetes Centre
Mackay Memorial Hospital Taiwan
Shanghai Jiao Tong University
University of Otago
Beijing Children's Hospital
Illawarra Diabetes Services
Institute for Studies on Diabetes Foundation
Mater Medical Research Institute
Karolinska University Hospital
Fudan University
Christchurch Hospital New Zealand
Central Hospital of Yaounde FMBS
Steno Diabetes Center
Clinic University Hospital Valencia
Hospital Infantil Universitario Niño Jesús
University Children’s Hospital
Sechenov First Moscow State Medical University
Klinikum und Fachbereich Medizin Johann Wolfgang Goethe-Universitat Frankfurt am Main
Universitat Ulm
University of Bristol
Malmo University Hospital
Hospital de Cruces
Salesi Hospital
Fakultni Nemocnice v Motole
University Campus Bio-Medico
Keywords: Pharmacology, Toxicology and Pharmaceutics
Issue Date: 1-Aug-2010
Citation: Clinical Trials. Vol.7, No.1_suppl (2010), S5-S32
Abstract: © The Author(s) 2010. 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: 17407753
Appears in Collections:Scopus 2006-2010

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