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The evolution of health data ecosystems: An international survey.

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Title: The evolution of health data ecosystems: An international survey.
Authors: Lerner-Ellis JP; Pathology and Laboratory Medicine, Mount Sinai Hospital, Toronto, ON M5G 1X5, Canada; Department of Laboratory Medicine and Pathobiology, University of Toronto, Toronto, ON M5S 1A8, Canada; Lunenfeld-Tanenbaum Research Institute, Toronto, ON M5G 1X5, Canada. Electronic address: jordan.lerner-ellis@sinaihealth.ca., Price EM; Children's Hospital of Eastern Ontario Research Institute, University of Ottawa, Ottawa, ON K1H 8L1, Canada., Subhani S; Pathology and Laboratory Medicine, Mount Sinai Hospital, Toronto, ON M5G 1X5, Canada; Lunenfeld-Tanenbaum Research Institute, Toronto, ON M5G 1X5, Canada., Boughtwood T; Australian Genomics, Melbourne, VIC 3052, Australia; Murdoch Children's Research Institute, Melbourne, VIC 3052, Australia., Brion MJ; Australian Genomics, Melbourne, VIC 3052, Australia; Murdoch Children's Research Institute, Melbourne, VIC 3052, Australia., Rendon A; Genomics England, London E14 5AB, UK., Cividanes L; Danish National Genome Center, 2300 Copenhagen, Denmark., Gemmer J; Danish National Genome Center, 2300 Copenhagen, Denmark., Ciofani D; The Broad Institute, Boston, MA 02142, USA., Bertin N; Genome Institute of Singapore (GIS), Agency for Science, Technology and Research (A∗STAR), 60 Biopolis Street, Genome #02-01, Singapore 138672, Singapore., Wee SS; Precision Health Research, Singapore (PRECISE), Singapore 139234, Singapore., Robertson S; The Laboratory for Genomic Medicine, Department of Women's and Children's Health, Dunedin School of Medicine, University of Otago, Dunedin 9016, New Zealand., Baz B; Saudi Human Genome Program, Health Sector, King Abdulaziz City for Science and Technology, Riyadh, Saudi Arabia., Crameri K; Personalized Health Informatics Group, SIB Swiss Institute of Bioinformatics, 4051 Basel, Switzerland., Österle S; Personalized Health Informatics Group, SIB Swiss Institute of Bioinformatics, 4051 Basel, Switzerland., Wirta V; Science for Life Laboratory, Department of Microbiology, Tumor and Cell Biology, Karolinska Institutet, Stockholm, Sweden; Department of Clinical Genetics and Genomics, Karolinska University Hospital, Stockholm, Sweden., Sikora P; Genomic Medicine Sweden, Gothenburg, Sweden., Lindstrand A; Department of Clinical Genetics and Genomics, Karolinska University Hospital, Stockholm, Sweden; Karolinska Institutet, Department of Molecular Medicine and Surgery, 171 76 Stockholm, Sweden., Nowak F; 2025 France Genomic Medicine Initiative, Health Technologies Institute, INSERM, Paris, France., Amado I; 2025 France Genomic Medicine Initiative, Health Technologies Institute, INSERM, Paris, France., Mulder NJ; H3ABioNet, a Pan African Bioinformatics Network for H3Africa, Computational Biology Division, IDM, University of Cape Town, Cape Town, South Africa., Ganna A; Institute for Molecular Medicine Finland (FIMM), HiLIFE, University of Helsinki, Helsinki, Finland., Goodhand P; Global Alliance for Genomics and Health (GA4GH), Ontario Institute for Cancer Research (OICR), Toronto, ON, Canada., Smith LD; Global Alliance for Genomics and Health (GA4GH), Ontario Institute for Cancer Research (OICR), Toronto, ON, Canada; The Hospital for Sick Children, Toronto, ON M5G 1E8, Canada., Marshall CR; The Hospital for Sick Children, Toronto, ON M5G 1E8, Canada., Zawati M; Centre of Genomics and Policy, McGill University, Montreal, QC H3A 0G1, Canada., Ferretti V; Department of Biochemistry and Molecular Medicine, Faculty of Medicine, Université de Montréal, Montreal, QC H3T 1J4, Canada; CHU Sainte-Justine Azrieli Research Center, Montreal, QC H3T 1C5, Canada., Michaud JL; CHU Sainte-Justine Azrieli Research Center, Montreal, QC H3T 1C5, Canada; Department of Pediatrics and Neurosciences, Faculty of Medicine, Université de Montreal, Montréal, QC, Canada., Bulman D; Alberta Precision Laboratories, Edmonton, AB T3K 2A8, Canada; Department of Medical Genetics, University of Calgary, Calgary, AB T2N 1N4, Canada; Clinical Genetics Unit, Alberta Children's Hospital Research Institute (ACHRI), Calgary, AB T3B 6A8, Canada., Bernier F; Department of Medical Genetics, University of Calgary, Calgary, AB T2N 1N4, Canada; Clinical Genetics Unit, Alberta Children's Hospital Research Institute (ACHRI), Calgary, AB T3B 6A8, Canada., Boycott KM; Children's Hospital of Eastern Ontario Research Institute, University of Ottawa, Ottawa, ON K1H 8L1, Canada. Electronic address: kboycott@cheo.on.ca.
Source: American journal of human genetics [Am J Hum Genet] 2025 Aug 07; Vol. 112 (8), pp. 1769-1777. Date of Electronic Publication: 2025 Jul 21.
Publication Type: Journal Article; Review; Research Support, Non-U.S. Gov't
Journal Info: Publisher: Cell Press Country of Publication: United States NLM ID: 0370475 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1537-6605 (Electronic) Linking ISSN: 00029297 NLM ISO Abbreviation: Am J Hum Genet Subsets: MEDLINE
Database: MEDLINE Ultimate
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  Data: <searchLink fieldCode="AU" term="%22Lerner-Ellis+JP%22">Lerner-Ellis JP</searchLink>; Pathology and Laboratory Medicine, Mount Sinai Hospital, Toronto, ON M5G 1X5, Canada; Department of Laboratory Medicine and Pathobiology, University of Toronto, Toronto, ON M5S 1A8, Canada; Lunenfeld-Tanenbaum Research Institute, Toronto, ON M5G 1X5, Canada. Electronic address: jordan.lerner-ellis@sinaihealth.ca.<br /><searchLink fieldCode="AU" term="%22Price+EM%22">Price EM</searchLink>; Children's Hospital of Eastern Ontario Research Institute, University of Ottawa, Ottawa, ON K1H 8L1, Canada.<br /><searchLink fieldCode="AU" term="%22Subhani+S%22">Subhani S</searchLink>; Pathology and Laboratory Medicine, Mount Sinai Hospital, Toronto, ON M5G 1X5, Canada; Lunenfeld-Tanenbaum Research Institute, Toronto, ON M5G 1X5, Canada.<br /><searchLink fieldCode="AU" term="%22Boughtwood+T%22">Boughtwood T</searchLink>; Australian Genomics, Melbourne, VIC 3052, Australia; Murdoch Children's Research Institute, Melbourne, VIC 3052, Australia.<br /><searchLink fieldCode="AU" term="%22Brion+MJ%22">Brion MJ</searchLink>; Australian Genomics, Melbourne, VIC 3052, Australia; Murdoch Children's Research Institute, Melbourne, VIC 3052, Australia.<br /><searchLink fieldCode="AU" term="%22Rendon+A%22">Rendon A</searchLink>; Genomics England, London E14 5AB, UK.<br /><searchLink fieldCode="AU" term="%22Cividanes+L%22">Cividanes L</searchLink>; Danish National Genome Center, 2300 Copenhagen, Denmark.<br /><searchLink fieldCode="AU" term="%22Gemmer+J%22">Gemmer J</searchLink>; Danish National Genome Center, 2300 Copenhagen, Denmark.<br /><searchLink fieldCode="AU" term="%22Ciofani+D%22">Ciofani D</searchLink>; The Broad Institute, Boston, MA 02142, USA.<br /><searchLink fieldCode="AU" term="%22Bertin+N%22">Bertin N</searchLink>; Genome Institute of Singapore (GIS), Agency for Science, Technology and Research (A∗STAR), 60 Biopolis Street, Genome #02-01, Singapore 138672, Singapore.<br /><searchLink fieldCode="AU" term="%22Wee+SS%22">Wee SS</searchLink>; Precision Health Research, Singapore (PRECISE), Singapore 139234, Singapore.<br /><searchLink fieldCode="AU" term="%22Robertson+S%22">Robertson S</searchLink>; The Laboratory for Genomic Medicine, Department of Women's and Children's Health, Dunedin School of Medicine, University of Otago, Dunedin 9016, New Zealand.<br /><searchLink fieldCode="AU" term="%22Baz+B%22">Baz B</searchLink>; Saudi Human Genome Program, Health Sector, King Abdulaziz City for Science and Technology, Riyadh, Saudi Arabia.<br /><searchLink fieldCode="AU" term="%22Crameri+K%22">Crameri K</searchLink>; Personalized Health Informatics Group, SIB Swiss Institute of Bioinformatics, 4051 Basel, Switzerland.<br /><searchLink fieldCode="AU" term="%22Österle+S%22">Österle S</searchLink>; Personalized Health Informatics Group, SIB Swiss Institute of Bioinformatics, 4051 Basel, Switzerland.<br /><searchLink fieldCode="AU" term="%22Wirta+V%22">Wirta V</searchLink>; Science for Life Laboratory, Department of Microbiology, Tumor and Cell Biology, Karolinska Institutet, Stockholm, Sweden; Department of Clinical Genetics and Genomics, Karolinska University Hospital, Stockholm, Sweden.<br /><searchLink fieldCode="AU" term="%22Sikora+P%22">Sikora P</searchLink>; Genomic Medicine Sweden, Gothenburg, Sweden.<br /><searchLink fieldCode="AU" term="%22Lindstrand+A%22">Lindstrand A</searchLink>; Department of Clinical Genetics and Genomics, Karolinska University Hospital, Stockholm, Sweden; Karolinska Institutet, Department of Molecular Medicine and Surgery, 171 76 Stockholm, Sweden.<br /><searchLink fieldCode="AU" term="%22Nowak+F%22">Nowak F</searchLink>; 2025 France Genomic Medicine Initiative, Health Technologies Institute, INSERM, Paris, France.<br /><searchLink fieldCode="AU" term="%22Amado+I%22">Amado I</searchLink>; 2025 France Genomic Medicine Initiative, Health Technologies Institute, INSERM, Paris, France.<br /><searchLink fieldCode="AU" term="%22Mulder+NJ%22">Mulder NJ</searchLink>; H3ABioNet, a Pan African Bioinformatics Network for H3Africa, Computational Biology Division, IDM, University of Cape Town, Cape Town, South Africa.<br /><searchLink fieldCode="AU" term="%22Ganna+A%22">Ganna A</searchLink>; Institute for Molecular Medicine Finland (FIMM), HiLIFE, University of Helsinki, Helsinki, Finland.<br /><searchLink fieldCode="AU" term="%22Goodhand+P%22">Goodhand P</searchLink>; Global Alliance for Genomics and Health (GA4GH), Ontario Institute for Cancer Research (OICR), Toronto, ON, Canada.<br /><searchLink fieldCode="AU" term="%22Smith+LD%22">Smith LD</searchLink>; Global Alliance for Genomics and Health (GA4GH), Ontario Institute for Cancer Research (OICR), Toronto, ON, Canada; The Hospital for Sick Children, Toronto, ON M5G 1E8, Canada.<br /><searchLink fieldCode="AU" term="%22Marshall+CR%22">Marshall CR</searchLink>; The Hospital for Sick Children, Toronto, ON M5G 1E8, Canada.<br /><searchLink fieldCode="AU" term="%22Zawati+M%22">Zawati M</searchLink>; Centre of Genomics and Policy, McGill University, Montreal, QC H3A 0G1, Canada.<br /><searchLink fieldCode="AU" term="%22Ferretti+V%22">Ferretti V</searchLink>; Department of Biochemistry and Molecular Medicine, Faculty of Medicine, Université de Montréal, Montreal, QC H3T 1J4, Canada; CHU Sainte-Justine Azrieli Research Center, Montreal, QC H3T 1C5, Canada.<br /><searchLink fieldCode="AU" term="%22Michaud+JL%22">Michaud JL</searchLink>; CHU Sainte-Justine Azrieli Research Center, Montreal, QC H3T 1C5, Canada; Department of Pediatrics and Neurosciences, Faculty of Medicine, Université de Montreal, Montréal, QC, Canada.<br /><searchLink fieldCode="AU" term="%22Bulman+D%22">Bulman D</searchLink>; Alberta Precision Laboratories, Edmonton, AB T3K 2A8, Canada; Department of Medical Genetics, University of Calgary, Calgary, AB T2N 1N4, Canada; Clinical Genetics Unit, Alberta Children's Hospital Research Institute (ACHRI), Calgary, AB T3B 6A8, Canada.<br /><searchLink fieldCode="AU" term="%22Bernier+F%22">Bernier F</searchLink>; Department of Medical Genetics, University of Calgary, Calgary, AB T2N 1N4, Canada; Clinical Genetics Unit, Alberta Children's Hospital Research Institute (ACHRI), Calgary, AB T3B 6A8, Canada.<br /><searchLink fieldCode="AU" term="%22Boycott+KM%22">Boycott KM</searchLink>; Children's Hospital of Eastern Ontario Research Institute, University of Ottawa, Ottawa, ON K1H 8L1, Canada. Electronic address: kboycott@cheo.on.ca.
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