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Open Access Research article

PhenX RISING: real world implementation and sharing of PhenX measures

Catherine A McCarty1*, Wayne Huggins2, Allison E Aiello3, Robert M Bilder4, Ahmad Hariri5, Terry L Jernigan6, Erik Newman6, Dharambir K Sanghera7, Timothy J Strauman5, Yi Zeng8, Erin M Ramos9, Heather A Junkins9 and for the PhenX RISING network

Author Affiliations

1 Essentia Institute of Rural Health, Maildrop: 6AV-2, 502 East Second Street, Duluth, MN 55805, USA

2 RTI International, Research Triangle Park, Durham, NC USA

3 University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA

4 University California Los Angeles, Los Angeles, CA USA

5 Duke University, Durham, NC USA

6 University California San Diego, San Diego, CA USA

7 University of Oklahoma College of Medicine, Oklahoma City, OK USA

8 Duke University, Durham, NC USA

9 National Human Genome Research Institute, Bethesda, MD USA

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BMC Medical Genomics 2014, 7:16  doi:10.1186/1755-8794-7-16

Published: 20 March 2014

Abstract

Background

The purpose of this manuscript is to describe the PhenX RISING network and the site experiences in the implementation of PhenX measures into ongoing population-based genomic studies.

Methods

Eighty PhenX measures were implemented across the seven PhenX RISING groups, thirty-three of which were used at more than two sites, allowing for cross-site collaboration. Each site used between four and 37 individual measures and five of the sites are validating the PhenX measures through comparison with other study measures. Self-administered and computer-based administration modes are being evaluated at several sites which required changes to the original PhenX Toolkit protocols. A network-wide data use agreement was developed to facilitate data sharing and collaboration.

Results

PhenX Toolkit measures have been collected for more than 17,000 participants across the PhenX RISING network. The process of implementation provided information that was used to improve the PhenX Toolkit. The Toolkit was revised to allow researchers to select self- or interviewer administration when creating the data collection worksheets and ranges of specimens necessary to run biological assays has been added to the Toolkit.

Conclusions

The PhenX RISING network has demonstrated that the PhenX Toolkit measures can be implemented successfully in ongoing genomic studies. The next step will be to conduct gene/environment studies.

Keywords:
PhenX; Phenotype; Epidemiology; Risk factors; Harmonization