Designing and implementing sample and data collection for an international genetics study
| Autor: | Andrew Paterson, Francesco CUCCA, Neeraj Kumar, Nora Hosszufalusi, Luis Castaño, Jinny Willis, Valdis Pirags, Farren Briggs, Neil Walker, Joanna Howson, Ondrej Cinek, Richard McIndoe, Francisco Javier Ampudia Blasco, Claire Vandiedonck, Mark A. Hall, Ana M Wägner, Xiaoying Li, Flemming Pociot, Didac Mauricio, Vaidotas Urbanavicius, Jennifer Couper, Adam Kretowski, Mariusz Kuźmicki, Jean Lawrence, Professor David Dunger, Federico Vázquez, Ian Nicholson, Ellen Schofield, Ingrid Kockum, Mikael Knip, Tadej Battelino, Francesca Ingegnoli, Thomas Brodnicki, Patrick Concannon, Jesús Argente, Johnny Ludvigsson, Kerstin Brismar, Peter Colman, Gurvinder Kaur, Oliver Burren, Eva Tsalikian, Rohana Abdul Ghani, Marta Hernández, William McLaren, Alessandro Doria, Raquel Corripio, Stephen Rich, Daniel Metzger, Magdalena Avbelj Stefanija, Jesper Johannesen, Zdenek Sumnik, Steven Willi, Vallo Tillmann, Bart Van der Auwera |
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| Přispěvatelé: | Pathology/molecular and cellular medicine, Diabetes Pathology & Therapy |
| Jazyk: | angličtina |
| Rok vydání: | 2010 |
| Předmět: |
Research design
Adult Male Internationality Adolescent Genotype Endocrinology Diabetes and Metabolism MEDLINE Sample (statistics) Data Collection/methods 03 medical and health sciences 0302 clinical medicine Resource (project management) Informed consent Medicine Humans risk factors 030212 general & internal medicine Program Development quality control Child 030304 developmental biology Pharmacology Genetics 0303 health sciences Type 1 diabetes Data collection business.industry Data Collection Articles General Medicine medicine.disease 3. Good health Diabetes Mellitus Type 1 Research Design Diabetes Mellitus Type 1/epidemiology Government Regulation Data system young adult Female business |
| Zdroj: | Clinical Trials (London, England) |
| Popis: | 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. Clinical Trials 2010; 7: S5—S32. http://ctj.sagepub.com |
| Databáze: | OpenAIRE |
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