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

Publication ,  Journal Article
Hilner, JE; Perdue, LH; Sides, EG; Pierce, JJ; Wägner, AM; Aldrich, A; Loth, A; Albret, L; Wagenknecht, LE; Nierras, C; Akolkar, B; T1DGC,
Published in: Clin Trials
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.

Duke Scholars

Published In

Clin Trials

DOI

EISSN

1740-7753

Publication Date

2010

Volume

7

Issue

1 Suppl

Start / End Page

S5 / S32

Location

England

Related Subject Headings

  • Young Adult
  • Statistics & Probability
  • Risk Factors
  • Research Design
  • Quality Control
  • Program Development
  • Male
  • Internationality
  • Humans
  • Government Regulation
 

Citation

APA
Chicago
ICMJE
MLA
NLM
Hilner, J. E., Perdue, L. H., Sides, E. G., Pierce, J. J., Wägner, A. M., Aldrich, A., … T1DGC, . (2010). Designing and implementing sample and data collection for an international genetics study: the Type 1 Diabetes Genetics Consortium (T1DGC). Clin Trials, 7(1 Suppl), S5–S32. https://doi.org/10.1177/1740774510373497
Hilner, Joan E., Letitia H. Perdue, Elizabeth G. Sides, June J. Pierce, Ana M. Wägner, Alan Aldrich, Amanda Loth, et al. “Designing and implementing sample and data collection for an international genetics study: the Type 1 Diabetes Genetics Consortium (T1DGC).Clin Trials 7, no. 1 Suppl (2010): S5–32. https://doi.org/10.1177/1740774510373497.
Hilner JE, Perdue LH, Sides EG, Pierce JJ, Wägner AM, Aldrich A, et al. Designing and implementing sample and data collection for an international genetics study: the Type 1 Diabetes Genetics Consortium (T1DGC). Clin Trials. 2010;7(1 Suppl):S5–32.
Hilner, Joan E., et al. “Designing and implementing sample and data collection for an international genetics study: the Type 1 Diabetes Genetics Consortium (T1DGC).Clin Trials, vol. 7, no. 1 Suppl, 2010, pp. S5–32. Pubmed, doi:10.1177/1740774510373497.
Hilner JE, Perdue LH, Sides EG, Pierce JJ, Wägner AM, Aldrich A, Loth A, Albret L, Wagenknecht LE, Nierras C, Akolkar B, T1DGC. Designing and implementing sample and data collection for an international genetics study: the Type 1 Diabetes Genetics Consortium (T1DGC). Clin Trials. 2010;7(1 Suppl):S5–S32.
Journal cover image

Published In

Clin Trials

DOI

EISSN

1740-7753

Publication Date

2010

Volume

7

Issue

1 Suppl

Start / End Page

S5 / S32

Location

England

Related Subject Headings

  • Young Adult
  • Statistics & Probability
  • Risk Factors
  • Research Design
  • Quality Control
  • Program Development
  • Male
  • Internationality
  • Humans
  • Government Regulation