PhenX RISING: real world implementation and sharing of PhenX measures.

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.

SUBMITTER: McCarty CA 

PROVIDER: S-EPMC3994539 | biostudies-literature | 2014 Mar

REPOSITORIES: biostudies-literature