Designing and implementing sample and data collection for an international genetics study

The Type 1 Diabetes Genetics Consortium (T1DGC)

the T1DGC

Research output: Contribution to journalArticle

13 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)S5-S32
JournalClinical Trials
Volume7
Issue number1_suppl
DOIs
StatePublished - Aug 1 2010

Fingerprint

Type 1 Diabetes Mellitus
National Institute of Diabetes and Digestive and Kidney Diseases (U.S.)
Siblings
HLA Antigens
North America
Informed Consent
Research
Information Systems
Autoantibodies
Research Design
Organizations
Databases

All Science Journal Classification (ASJC) codes

  • Pharmacology

Cite this

Designing and implementing sample and data collection for an international genetics study : The Type 1 Diabetes Genetics Consortium (T1DGC). / the T1DGC.

In: Clinical Trials, Vol. 7, No. 1_suppl, 01.08.2010, p. S5-S32.

Research output: Contribution to journalArticle

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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.",
author = "{the T1DGC} and Hilner, {Joan E.} and Perdue, {Letitia H.} and Sides, {Elizabeth G.} and Pierce, {June J.} and W{\"a}gner, {Ana M.} and Alan Aldrich and Amanda Loth and Lotte Albret and Wagenknecht, {Lynne E.} and Concepcion Nierras and Beena Akolkar and Tracey Baskerville and Nines Bautista and Eesh Bhatia and Vijayalakshmi Bhatia and {Bin Hasan}, Kamaruzaman and Francois Bonnici and Thomas Brodnicki and Brian Browning and Fergus Cameron and Katharee Chaichanwatanakul and {To Cheung}, Pik and Peter Colman and Andrew Cotterill and Jenny Couper and Patricia Crock and Ric Cutfield and Tim Davis and Paul Dixon and Kim Donaghue and Katrina Dowling and Paul Drury and Sarah Dye and Shane Gellert and {Abdul Ghani}, Rohana and Ristan Greer and Xueyao Han and Len Harrison and Nick Homatopoulos and Linong Ji and Tim Jones and {Kah Yin}, Loke and {Azmi Kamaruddin}, Nor and Uma Kanga and Alok Kanungo and Gurvinder Kaur and Betty Kek and Simon Knowles and Jeremy Krebs and Ramin Alemzadeh",
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T1 - Designing and implementing sample and data collection for an international genetics study

T2 - The Type 1 Diabetes Genetics Consortium (T1DGC)

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AU - Hilner, Joan E.

AU - Perdue, Letitia H.

AU - Sides, Elizabeth G.

AU - Pierce, June J.

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AU - Aldrich, Alan

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AU - Albret, Lotte

AU - Wagenknecht, Lynne E.

AU - Nierras, Concepcion

AU - Akolkar, Beena

AU - Baskerville, Tracey

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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 - Alemzadeh, Ramin

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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.

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