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Table 1 Efforts and incentives to leverage clinical data for genomics research

From: Extracting research-quality phenotypes from electronic health records to support precision medicine

Projects

Region

Start year

Website

Aims

eMERGE

United States

2007

http://emerge-network.org [152]

To develop methods and best practices for the utilization of EHRs for genetic research

i2b2

United States

2004

http://www.i2b2.org [153]

To provide researchers with useful tools to leverage EHRs for clinical and genetic research

PGPop

United States

2010

http://pgpop.mc.vanderbilt.edu [59]

To understand how a person’s genes affect his or her response to medicines

deCODE genetics

Iceland

1996

http://www.decode.com [60]

To leverage population-based and EHR-linked biosamples to investigate inherited causes of common diseases

UK Biobank

United Kingdom

2007

http://www.ukbiobank.ac.uk [61]

To improve the prevention, diagnosis and treatment of a wide range of serious and life-threatening illnesses through a collection of around 500,000 volunteers' biosamples and clinical information

MVP

United States

2011

http://www.research.va.gov/mvp [52]

To enroll one million volunteers and use their clinical and genetic data to improve health care for veterans

KP RPGEH

United States

2009

http://www.rpgeh.kaiser.org [53]

To examine the genetic and environmental factors that influence common diseases

CKB

China

2004

http://www.ckbiobank.org [154]

To explore the complex interplay between genes and environmental factors on the risks of common chronic diseases

  1. CKB, China Kadoorie Biobank; eMERGE, The Electronic Medical Records and Genomics Network; i2b2, Informatics for Integrating Biology and the Bedside; KP, Kaiser Permanente; MVP, Million Veteran Program; PGPop, Pharmacogenomic Discovery and Replication in Very Large Patient Populations; RPGEH, Research Program on Genes, Environment, and Health.