PhenX RISING: real world implementation and sharing of PhenX measures

Abstract

BackgroundThe 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.MethodsEighty 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.ResultsPhenX 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.ConclusionsThe 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.

Cognitive, emotion control, and motor performance of adolescents in the NCANDA study: Contributions from alcohol consumption, age, sex, ethnicity, and family history of addiction.

“…Indeed, the utility of computerized test batteries has been demonstrated in a wide variety of settings, including sport head injury (Rahman-Filipiak & Woodard, 2013; Taylor, 2012), active-duty military (Cole et al, 2013), diseases of aging (Canini et al, 2014; Dwolatzky, Dimant, Simon, & Doniger, 2010; Mielke et al, 2014), epilepsy (Martinelli, Cecato, Bartholomeu, & Montiel, 2014), and infectious diseases potentially affecting the brain (Koski et al, 2011). Batteries, such as the CANTAB (Robbins et al, 1994), PhenX Toolkit (McCarty, Berg, et al, 2014; McCarty, Huggins, et al, 2014), NIH Toolbox (Carlozzi et al, 2014; Heaton et al, 2014; Weintraub et al, 2014), and the University of Pennsylvania Web-based Computerized Neurocognitive Battery (WebCNP) (webcnp.med.upenn.edu/) (Gur et al, 2012; Gur et al, 2010), each use multiple measures to assess principal cognitive domains of executive functions, several component processes of declarative memory, visuospatial abilities, emotion discrimination, and emotional control valid for pre-adolescence through senescence and commonly affected in adolescents with alcohol use disorder (for review, Squeglia, Jacobus, & Tapert, 2014). Benefits of most computerized batteries include acquisition of response time for individual trials for every test, thereby enabling assessment of speed of responding and efficiency scores based on speed-accuracy tradeoff (Gur et al, 2010).…”

Anxiety is related to indices of cortical maturation in typically developing children and adolescents

“…The ongoing PING study was included in the PhenX RISING project (McCarty et al 2014), an initiative aimed at sharing and implementing measures from the PhenX (consensus measures of phenotypes and exposures) Toolkit (http://www.phenxtoolkit.org). As part of this initiative, PING participants above the age of 8 were asked to complete a set of web-based self-report measures, including the generalized anxiety measure used in the current study, using a secure data collection tool called Assessment Center (http://www.assessmentcenter.net).…”

“…PING participants who completed this measure and whose MRI scan yielded acceptable imaging data were included in the current study. For more details on the role of PING in the PhenX RISING project, see McCarty et al (2014).…”

Addictions Neuroclinical Assessment: A Neuroscience-Based Framework for Addictive Disorders

“…The PhenX toolkit includes a group of assessments specifically focused on substance abuse and addiction (SAA), identified with support from domain experts and funded by the National Institute on Drug Abuse (NIDA). The PhenX Real world Implementation and Sharing (RISING) consortium is a significant step forward in the practical application of PhenX measures (49). PhenX publications have been largely focused on implementation of PhenX measures (35, 50-53), including a recent publication on the commonality of findings in different addictive disorders across measures of addiction (54).…”