Li-Fraumeni Exploration Consortium Data Coordinating Center: Building an Interactive Web-Based Resource for Collaborative International Cancer Epidemiology Research for a Rare Condition.

Cancer Epidemiology, Biomarkers & Prevention : a Publication of the American Association for Cancer Research, Cosponsored by the American Society of Preventive Oncology
Phuong L MaiJeffrey N Weitzel

Abstract

The success of multisite collaborative research relies on effective data collection, harmonization, and aggregation strategies. Data Coordination Centers (DCC) serve to facilitate the implementation of these strategies. The utility of a DCC can be particularly relevant for research on rare diseases where collaboration from multiple sites to amass large aggregate datasets is essential. However, approaches to building a DCC have been scarcely documented. The Li-Fraumeni Exploration (LiFE) Consortium's DCC was created using multiple open source packages, including LAM/G Application (Linux, Apache, MySQL, Grails), Extraction-Transformation-Loading (ETL) Pentaho Data Integration Tool, and the Saiku-Mondrian client. This document serves as a resource for building a rare disease DCC for multi-institutional collaborative research. The primary scientific and technological objective to create an online central repository into which data from all participating sites could be deposited, harmonized, aggregated, disseminated, and analyzed was completed. The cohort now include 2,193 participants from six contributing sites, including 1,354 individuals from families with a pathogenic or likely variant in TP53. Data on cancer diagnoses are also...Continue Reading

References

Oct 1, 1969·Annals of Internal Medicine·F P Li, J F Fraumeni
Apr 1, 1995·Controlled Clinical Trials·B A BlumensteinH E Mitchell
May 19, 2001·Journal of Medical Genetics·A ChompretC Bonaïti-Pellié
May 15, 2002·Human Mutation·Magali OlivierPierre Hainaut
Mar 1, 2003·American Journal of Human Genetics·Shih-Jen HwangLouise C Strong
Mar 6, 2003·Human Mutation·J M Varley
Aug 17, 2006·Cancer Research·Chih-Chieh WuLouise C Strong
May 31, 2008·Journal of Medical Genetics·G BougeardUNKNOWN French LFS working group
Feb 11, 2009·Journal of Clinical Oncology : Official Journal of the American Society of Clinical Oncology·Kelly D GonzalezJeffrey N Weitzel
Jun 27, 2009·Journal of Medical Genetics·K D GonzalezS S Sommer
Aug 5, 2009·Journal of Clinical Oncology : Official Journal of the American Society of Clinical Oncology·Julie TinatThierry Frébourg
Sep 4, 2010·International Journal of Epidemiology·Isabel FortierThomas J Hudson
Aug 2, 2011·Cancer Epidemiology, Biomarkers & Prevention : a Publication of the American Association for Cancer Research, Cosponsored by the American Society of Preventive Oncology·Betsy RollandJohn D Potter
Feb 11, 2012·Journal of the American Medical Informatics Association : JAMIA·Peter B McGarveySubha Madhavan
Mar 7, 2012·Breast Cancer Research and Treatment·Serena MasciariJudy E Garber
Aug 2, 2012·Familial Cancer·Jeanna M McCuaigDavid Malkin
Apr 8, 2014·Human Mutation·Junne KamiharaJudy E Garber
May 28, 2015·Journal of Clinical Oncology : Official Journal of the American Society of Clinical Oncology·Gaëlle BougeardThierry Frebourg

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