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dc.contributor.authorOrlando, L.A.
dc.contributor.authorVoils, C.
dc.contributor.authorHorowitz, C.R.
dc.date.accessioned2019-09-13T16:41:56Z
dc.date.available2019-09-13T16:41:56Z
dc.date.issued2019
dc.identifier.urihttps://www.scopus.com/inward/record.uri?eid=2-s2.0-85065399979&doi=10.1002%2fmgg3.636&partnerID=40&md5=a2930251c435bbf9588592963f6c6ed6
dc.identifier.urihttp://hdl.handle.net/10713/10661
dc.description.abstractBackground: The IGNITE network funds six genomic medicine projects. Though interventions varied, we hypothesized that synergies across projects could be leveraged to better understand the participant experiences with genomic medicine interventions. Therefore, we performed cross‐network analyses to identify associations between participant demographics and attitudes toward the intervention (attitude), plan to share results (share), and quality of life (QOL). Methods: Data collection for demographics, attitude, share, and QOL surveys were standardized across projects. Recruitment and survey administration varied by each project's protocol. Results: Participants (N = 6,817) were 67.2% (N = 4,584) female, and 37.4% (N = 3,544) were minority. Mean age = 54.0 (sd 14.a). Younger participants were as follows: (1) more positive in attitude pre‐intervention (1.15‐fold decrease/10‐year age increase (OR)) and more negative after (1.14‐fold increase OR); (2) higher in QOL pre‐intervention (1.07‐fold increase OR) and postintervention; (3) more likely to share results (1.12‐fold increase OR). Race was significant when sharing results (white participants increased OR = 1.88), but not for change in QOL pre–postintervention or attitude. Conclusion: Our findings demonstrate the feasibility of this approach and identified a few key themes which are as follows: age was consistently significant across the three outcomes, whereas race had less of an impact than expected. However, these are only associations and thus warrant further study. Copyright 2019 The Authors.en_US
dc.description.sponsorshipNational Human Genome Research Institute, Grant/Award Number: U01 HG007253, U01 HG007269, U01 HG007278, U01 HG007282, U01 HG007762 and U01 HG007775; National Institutes of Health, Grant/Award Number: K01 HL141690 and KL2 TR001429 ; HSR&D Research Career Scientist award, Grant/Award Number: RCS 14-443en_US
dc.description.urihttps://doi.org/10.1002/mgg3.636en_US
dc.language.isoen-USen_US
dc.publisherWiley-Blackwellen_US
dc.relation.ispartofMolecular Genetics and Genomic Medicine
dc.subjectattitudeen_US
dc.subjectcommon measuresen_US
dc.subjectgenomic medicineen_US
dc.subjectIGNITEen_US
dc.subjectplan to shareen_US
dc.subjectquality of lifeen_US
dc.titleIGNITE network: Response of patients to genomic medicine interventionsen_US
dc.typeArticleen_US
dc.identifier.doi10.1002/mgg3.636
dc.identifier.pmid30895746


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