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How does personal utility depend on clinical setting? Evidence from 3 cohorts.

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Title: How does personal utility depend on clinical setting? Evidence from 3 cohorts.
Authors: Poole E; Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada., Luca S; Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada., Assamad D; Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.; The Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, ON, Canada., Xiao B; Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada., Yan J; Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada., Xia YY; Department of Molecular Genetics, University of Toronto, Toronto, ON, Canada., Abbott LS; Division of Hematology/Oncology, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada., Armstrong L; British Columbia Children's Hospital Research Institute, Vancouver, BC, Canada.; Division of Medical Genetics, British Columbia Children's Hospital, Vancouver, BC, Canada., Birch P; British Columbia Children's Hospital Research Institute, Vancouver, BC, Canada.; Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada., Boycott KM; Department of Medical Genetics, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada., Carroll JC; Department of Family and Community Medicine, Sinai Health, University of Toronto, Toronto, ON, Canada., Chad L; Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, ON, Canada.; Department of Pediatrics, University of Toronto, Toronto, ON, Canada.; Department of Bioethics, The Hospital for Sick Children, Toronto, ON, Canada., Chitayat D; Department of Molecular Genetics, University of Toronto, Toronto, ON, Canada.; The Prenatal Diagnosis and Medical Genetics Program, Department of Obstetrics and Gynecology, Mount Sinai Hospital, Toronto, ON, Canada.; Department of Genetic Counseling, The Hospital for Sick Children, Toronto, ON, Canada., Denburg A; Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.; The Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, ON, Canada.; Division of Hematology/Oncology, The Hospital for Sick Children, Toronto, ON, Canada., Deyell RJ; British Columbia Children's Hospital Research Institute, Vancouver, BC, Canada.; Division of Pediatric Hematology/Oncology/BMT, British Columbia Children's Hospital, Vancouver, BC, Canada., Elliott AM; British Columbia Children's Hospital Research Institute, Vancouver, BC, Canada., Goudie C; Department of Pediatrics, Division of Hematology-Oncology, McGill University Health Centre, Montreal, QC, Canada., Laberge AM; Division of Medical Genetics, Centre Hospitalier Universitaire Sainte-Justine, Montreal, QC, Canada., Maio M; Mackenzie Richmond Hill Hospital, Richmond Hill, ON, Canada., Peltekova IT; Department of Pediatrics, University of Toronto, Toronto, ON, Canada.; Division of Developmental Pediatrics, Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada., Quinlan B; Patient Partner, Ontario Genetics Advisory Committee, Ontario Health., Sawyer SL; Department of Medical Genetics, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada., Silver R; The Prenatal Diagnosis and Medical Genetics Program, Department of Obstetrics and Gynecology, Mount Sinai Hospital, Toronto, ON, Canada., Smith M; Patient Partner, Canadian Organization for Rare Disorders., Teitelbaum R; Mackenzie Richmond Hill Hospital, Richmond Hill, ON, Canada., Villani A; Department of Pediatrics, University of Toronto, Toronto, ON, Canada.; Division of Hematology/Oncology, The Hospital for Sick Children, Toronto, ON, Canada., Ungar WJ; Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.; The Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, ON, Canada., Hayeems RZ; Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.; The Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, ON, Canada.
Corporate Authors: P-GUIDE Study Team
Source: Genetics in medicine open [Genet Med Open] 2025 Sep 03; Vol. 3, pp. 103453. Date of Electronic Publication: 2025 Sep 03 (Print Publication: 2025).
Publication Type: Journal Article
Journal Info: Publisher: Elsevier Inc Country of Publication: United States NLM ID: 9918734281906676 Publication Model: eCollection Cited Medium: Internet ISSN: 2949-7744 (Electronic) Linking ISSN: 29497744 NLM ISO Abbreviation: Genet Med Open Subsets: PubMed not MEDLINE
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  Data: How does personal utility depend on clinical setting? Evidence from 3 cohorts.
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  Data: <searchLink fieldCode="AU" term="%22Poole+E%22">Poole E</searchLink>; Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Luca+S%22">Luca S</searchLink>; Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Assamad+D%22">Assamad D</searchLink>; Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.; The Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Xiao+B%22">Xiao B</searchLink>; Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Yan+J%22">Yan J</searchLink>; Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Xia+YY%22">Xia YY</searchLink>; Department of Molecular Genetics, University of Toronto, Toronto, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Abbott+LS%22">Abbott LS</searchLink>; Division of Hematology/Oncology, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Armstrong+L%22">Armstrong L</searchLink>; British Columbia Children's Hospital Research Institute, Vancouver, BC, Canada.; Division of Medical Genetics, British Columbia Children's Hospital, Vancouver, BC, Canada.<br /><searchLink fieldCode="AU" term="%22Birch+P%22">Birch P</searchLink>; British Columbia Children's Hospital Research Institute, Vancouver, BC, Canada.; Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada.<br /><searchLink fieldCode="AU" term="%22Boycott+KM%22">Boycott KM</searchLink>; Department of Medical Genetics, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Carroll+JC%22">Carroll JC</searchLink>; Department of Family and Community Medicine, Sinai Health, University of Toronto, Toronto, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Chad+L%22">Chad L</searchLink>; Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, ON, Canada.; Department of Pediatrics, University of Toronto, Toronto, ON, Canada.; Department of Bioethics, The Hospital for Sick Children, Toronto, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Chitayat+D%22">Chitayat D</searchLink>; Department of Molecular Genetics, University of Toronto, Toronto, ON, Canada.; The Prenatal Diagnosis and Medical Genetics Program, Department of Obstetrics and Gynecology, Mount Sinai Hospital, Toronto, ON, Canada.; Department of Genetic Counseling, The Hospital for Sick Children, Toronto, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Denburg+A%22">Denburg A</searchLink>; Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.; The Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, ON, Canada.; Division of Hematology/Oncology, The Hospital for Sick Children, Toronto, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Deyell+RJ%22">Deyell RJ</searchLink>; British Columbia Children's Hospital Research Institute, Vancouver, BC, Canada.; Division of Pediatric Hematology/Oncology/BMT, British Columbia Children's Hospital, Vancouver, BC, Canada.<br /><searchLink fieldCode="AU" term="%22Elliott+AM%22">Elliott AM</searchLink>; British Columbia Children's Hospital Research Institute, Vancouver, BC, Canada.<br /><searchLink fieldCode="AU" term="%22Goudie+C%22">Goudie C</searchLink>; Department of Pediatrics, Division of Hematology-Oncology, McGill University Health Centre, Montreal, QC, Canada.<br /><searchLink fieldCode="AU" term="%22Laberge+AM%22">Laberge AM</searchLink>; Division of Medical Genetics, Centre Hospitalier Universitaire Sainte-Justine, Montreal, QC, Canada.<br /><searchLink fieldCode="AU" term="%22Maio+M%22">Maio M</searchLink>; Mackenzie Richmond Hill Hospital, Richmond Hill, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Peltekova+IT%22">Peltekova IT</searchLink>; Department of Pediatrics, University of Toronto, Toronto, ON, Canada.; Division of Developmental Pediatrics, Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Quinlan+B%22">Quinlan B</searchLink>; Patient Partner, Ontario Genetics Advisory Committee, Ontario Health.<br /><searchLink fieldCode="AU" term="%22Sawyer+SL%22">Sawyer SL</searchLink>; Department of Medical Genetics, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Silver+R%22">Silver R</searchLink>; The Prenatal Diagnosis and Medical Genetics Program, Department of Obstetrics and Gynecology, Mount Sinai Hospital, Toronto, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Smith+M%22">Smith M</searchLink>; Patient Partner, Canadian Organization for Rare Disorders.<br /><searchLink fieldCode="AU" term="%22Teitelbaum+R%22">Teitelbaum R</searchLink>; Mackenzie Richmond Hill Hospital, Richmond Hill, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Villani+A%22">Villani A</searchLink>; Department of Pediatrics, University of Toronto, Toronto, ON, Canada.; Division of Hematology/Oncology, The Hospital for Sick Children, Toronto, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Ungar+WJ%22">Ungar WJ</searchLink>; Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.; The Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Hayeems+RZ%22">Hayeems RZ</searchLink>; Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada.; The Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, ON, Canada.
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