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Table 1 PhenX RISING cohort descriptions, administration protocol and issues identified across the seven sites

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

Site Cohort description Administration Time to administer Issues identified during administration/protocol changes made
Asian Indian Diabetic Heart Study/SIKH Diabetes Study (AIDHS/SDS) 4,510 subjects aged 25+; 1,983 available with GWAS Recruited by study staff, free health check-up and cholesterol/glucose lab results incentive; PhenX biomarker data collected using frozen sera 40-45 minutes Not applicable
Detroit Neighborhood Health Study (Detroit) 800 subjects aged 18+ from population representative Detroit Neighborhood Health Study cohort with GWAS data Telephone administered, $25 incentive 32.3 minutes (average) Formatting to change instructions for telephone administration and CATI, coding, drop annual family income question due to errors
Duke University Imaging and Genetics (Duke) 200 college students and 50 adolescents. Genotyping for COMT Val Met genotype (rs4680) DAT gene (SLC6A3) Computer-administered 60 minutes Conversion to electronic format was difficult for some PhenX measures, but worth the investment
Experimenter administered, data collected by computer
Marshfield Clinic Personalized Medicine Research Project (PMRP) 3344 subjects aged 50+ from population-based biobank with GWAS data for age-related cataract, HDL, dementia, glaucoma; aged 39–100, 98% European American, 60% female Self-administered, mailed to non-institutionalized subjects, $10 incentive 20-40 minutes Formatting to remove instructions for person administering and scoring questionnaire, inconsistency of response order (no/yes, yes/no), skip logic errors, rules for coding
Pediatric Imaging Neurocognition and Genetics (PING) 284 subjects ages 9–21 recruited from 6 sites across the U.S. and 77 subjects from San Diego ages 3–7, all with GWAS data and neural architectural and neurocognitive phenotypes, 64% European American, 51% male Self-administered, web-based format completed at home for retrospective cases and in the lab or at home for prospective cases, reimbursements varied by site and ranged from $20 to $40; parents of participants ages 3–7 completed the CBQ in the lab 20-90 minutes Changed wording slightly for a few questions to make them applicable to all PING age groups, changed item orders when necessary for skip logic to work, scored short form domains using means instead of sums because of missing data
UCLA Consortium for Neuropsychiatric Phenomics 278 completed on-line protocol and 114 completed in-lab protocol; recruited from 840 eligible; ages 21–50; English speaking Web-based questionnaires (445 questions) for on-line protocol; paper and pencil tests for in-lab protocol 60 minutes on-line; 60 minutes in-lab Conversion to on-line administration involved some modifications to wording and logic
Chinese Longitudinal Healthy Longevity Survey (CLHLS) In our CLHLS 2011–2012 wave, we plan to follow-up interview those CLHLS subjects aged 65+ who were interviewed in 2008–2009 wave. We have newly added 13 PhenX measures (including 32 data items) in our CLHLS 2011–2012 new wave Home-based face-to-face interviews, with a gift of about $4. Up to middle March 2012, we have conducted interviews with 7,475 surviving CLHLS participants, and 4,914 interviews with a close family member of the deceased CLHLS Participants. So far, the response rate is 84.58%, lost-follow-up rate is 13.01%, and the refusing rate is 2.41% About 1.5 hours To meet the aims of this PhenX administrative Supplement project, we modified our previous CLHLS protocol by newly adding data collection of the 13 PhenX measures, including 32 data items