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A national population-based e-cohort of people with psychosis (PsyCymru) linking prospectively ascertained phenotypically rich and genetic data to routinely collected records: Overview, recruitment and linkage / Keith, Lloyd; Joanna, McGregor; Ann, John; Ronan, Lyons; David, Ford

Schizophrenia Research, Volume: 166, Issue: 1-3, Pages: 131 - 136

Swansea University Authors: Keith, Lloyd, Joanna, McGregor, Ann, John, Ronan, Lyons, David, Ford

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Abstract

PsyCymru was developed as a proof of concept to investigate the feasibility of linking a prospectively ascertained, well-characterised (linked clinical cohort) of people with psychosis in Wales, UK with large amounts of anonymised routinely collected health record data. We have now additionally link...

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Published in: Schizophrenia Research
ISSN: 0920-9964
Published: Elsevier BV 2015
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URI: https://cronfa.swan.ac.uk/Record/cronfa22303
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We have now additionally linked genetic data. PsyCymru is a research platform and infrastructure for psychosis research in Wales by the establishment of two cohorts. The first is a well characterised clinically-assessed cohort of 490 individuals aged 16 and over, including genetic data. Consented individuals underwent a structured interview using a series of well-validated questionnaires and gave blood for the purpose of DNA extraction for sequencing and candidate gene identification. This data was linked to routinely collected health and social datasets with identity encryption used to protect privacy. The second is a much larger (12,097 individuals) but less well characterised population-based e-cohort of prevalent psychosis cases created using a previously validated algorithm applied to anonymised routine data. Both cohorts can be tracked prospectively and retrospectively using anonymised routinely collected electronic health and administrative data in the Secure Anonymised Information Linkage (SAIL) databank. This unique platform pools data together from multiple sources; linking clinical, psychological, biological, genetic and health care factors to address a wide variety of research questions. This resource will continue to expand over the coming years in size, breadth and depth of data, with continued recruitment and additional measures planned.</abstract><type>Journal Article</type><journal>Schizophrenia Research</journal><volume>166</volume><journalNumber>1-3</journalNumber><paginationStart>131</paginationStart><paginationEnd>136</paginationEnd><publisher>Elsevier BV</publisher><issnPrint>0920-9964</issnPrint><keywords>E-cohort; Health informatics; Routine data, Psychosis, phenotype, genotype</keywords><publishedDay>1</publishedDay><publishedMonth>8</publishedMonth><publishedYear>2015</publishedYear><publishedDate>2015-08-01</publishedDate><doi>10.1016/j.schres.2015.05.036</doi><url/><notes/><college>COLLEGE NANME</college><department>Medicine</department><CollegeCode>COLLEGE CODE</CollegeCode><DepartmentCode>PMSC</DepartmentCode><institution>Swansea University</institution><lastEdited>2016-12-21T16:51:54.9797930</lastEdited><Created>2015-07-07T09:23:41.3300740</Created><path><level id="1">Swansea University Medical School</level><level id="2">Medicine</level></path><authors><author><firstname>Keith</firstname><surname>Lloyd</surname><orcid>0000-0002-1440-4124</orcid><order>1</order></author><author><firstname>Joanna</firstname><surname>McGregor</surname><orcid>0000-0003-0242-4600</orcid><order>2</order></author><author><firstname>Ann</firstname><surname>John</surname><orcid>0000-0002-5657-6995</orcid><order>3</order></author><author><firstname>Nick</firstname><surname>Craddock</surname><order>4</order></author><author><firstname>James T.</firstname><surname>Walters</surname><order>5</order></author><author><firstname>David</firstname><surname>Linden</surname><order>6</order></author><author><firstname>Ian</firstname><surname>Jones</surname><order>7</order></author><author><firstname>Richard</firstname><surname>Bentall</surname><order>8</order></author><author><firstname>Ronan</firstname><surname>Lyons</surname><orcid>0000-0001-5225-000X</orcid><order>9</order></author><author><firstname>David</firstname><surname>Ford</surname><orcid>0000-0001-6551-721X</orcid><order>10</order></author><author><firstname>Michael J.</firstname><surname>Owen</surname><order>11</order></author></authors><documents/></rfc1807>
spelling 2016-12-21T16:51:54.9797930 v2 22303 2015-07-07 A national population-based e-cohort of people with psychosis (PsyCymru) linking prospectively ascertained phenotypically rich and genetic data to routinely collected records: Overview, recruitment and linkage a13aaa0df9045c205e82ed3b95d18c10 0000-0002-1440-4124 Keith Lloyd Keith Lloyd true false caa651da7e3807cbeac8ec2f40643677 0000-0003-0242-4600 Joanna McGregor Joanna McGregor true false ed8a9c37bd7b7235b762d941ef18ee55 0000-0002-5657-6995 Ann John Ann John true false 83efcf2a9dfcf8b55586999d3d152ac6 0000-0001-5225-000X Ronan Lyons Ronan Lyons true false 52fc0c473b0da1b7218d87f9fc68a3e6 0000-0001-6551-721X David Ford David Ford true false 2015-07-07 PMSC PsyCymru was developed as a proof of concept to investigate the feasibility of linking a prospectively ascertained, well-characterised (linked clinical cohort) of people with psychosis in Wales, UK with large amounts of anonymised routinely collected health record data. We have now additionally linked genetic data. PsyCymru is a research platform and infrastructure for psychosis research in Wales by the establishment of two cohorts. The first is a well characterised clinically-assessed cohort of 490 individuals aged 16 and over, including genetic data. Consented individuals underwent a structured interview using a series of well-validated questionnaires and gave blood for the purpose of DNA extraction for sequencing and candidate gene identification. This data was linked to routinely collected health and social datasets with identity encryption used to protect privacy. The second is a much larger (12,097 individuals) but less well characterised population-based e-cohort of prevalent psychosis cases created using a previously validated algorithm applied to anonymised routine data. Both cohorts can be tracked prospectively and retrospectively using anonymised routinely collected electronic health and administrative data in the Secure Anonymised Information Linkage (SAIL) databank. This unique platform pools data together from multiple sources; linking clinical, psychological, biological, genetic and health care factors to address a wide variety of research questions. This resource will continue to expand over the coming years in size, breadth and depth of data, with continued recruitment and additional measures planned. Journal Article Schizophrenia Research 166 1-3 131 136 Elsevier BV 0920-9964 E-cohort; Health informatics; Routine data, Psychosis, phenotype, genotype 1 8 2015 2015-08-01 10.1016/j.schres.2015.05.036 COLLEGE NANME Medicine COLLEGE CODE PMSC Swansea University 2016-12-21T16:51:54.9797930 2015-07-07T09:23:41.3300740 Swansea University Medical School Medicine Keith Lloyd 0000-0002-1440-4124 1 Joanna McGregor 0000-0003-0242-4600 2 Ann John 0000-0002-5657-6995 3 Nick Craddock 4 James T. Walters 5 David Linden 6 Ian Jones 7 Richard Bentall 8 Ronan Lyons 0000-0001-5225-000X 9 David Ford 0000-0001-6551-721X 10 Michael J. Owen 11
title A national population-based e-cohort of people with psychosis (PsyCymru) linking prospectively ascertained phenotypically rich and genetic data to routinely collected records: Overview, recruitment and linkage
spellingShingle A national population-based e-cohort of people with psychosis (PsyCymru) linking prospectively ascertained phenotypically rich and genetic data to routinely collected records: Overview, recruitment and linkage
Keith, Lloyd
Joanna, McGregor
Ann, John
Ronan, Lyons
David, Ford
title_short A national population-based e-cohort of people with psychosis (PsyCymru) linking prospectively ascertained phenotypically rich and genetic data to routinely collected records: Overview, recruitment and linkage
title_full A national population-based e-cohort of people with psychosis (PsyCymru) linking prospectively ascertained phenotypically rich and genetic data to routinely collected records: Overview, recruitment and linkage
title_fullStr A national population-based e-cohort of people with psychosis (PsyCymru) linking prospectively ascertained phenotypically rich and genetic data to routinely collected records: Overview, recruitment and linkage
title_full_unstemmed A national population-based e-cohort of people with psychosis (PsyCymru) linking prospectively ascertained phenotypically rich and genetic data to routinely collected records: Overview, recruitment and linkage
title_sort A national population-based e-cohort of people with psychosis (PsyCymru) linking prospectively ascertained phenotypically rich and genetic data to routinely collected records: Overview, recruitment and linkage
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author_id_fullname_str_mv a13aaa0df9045c205e82ed3b95d18c10_***_Keith, Lloyd
caa651da7e3807cbeac8ec2f40643677_***_Joanna, McGregor
ed8a9c37bd7b7235b762d941ef18ee55_***_Ann, John
83efcf2a9dfcf8b55586999d3d152ac6_***_Ronan, Lyons
52fc0c473b0da1b7218d87f9fc68a3e6_***_David, Ford
author Keith, Lloyd
Joanna, McGregor
Ann, John
Ronan, Lyons
David, Ford
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description PsyCymru was developed as a proof of concept to investigate the feasibility of linking a prospectively ascertained, well-characterised (linked clinical cohort) of people with psychosis in Wales, UK with large amounts of anonymised routinely collected health record data. We have now additionally linked genetic data. PsyCymru is a research platform and infrastructure for psychosis research in Wales by the establishment of two cohorts. The first is a well characterised clinically-assessed cohort of 490 individuals aged 16 and over, including genetic data. Consented individuals underwent a structured interview using a series of well-validated questionnaires and gave blood for the purpose of DNA extraction for sequencing and candidate gene identification. This data was linked to routinely collected health and social datasets with identity encryption used to protect privacy. The second is a much larger (12,097 individuals) but less well characterised population-based e-cohort of prevalent psychosis cases created using a previously validated algorithm applied to anonymised routine data. Both cohorts can be tracked prospectively and retrospectively using anonymised routinely collected electronic health and administrative data in the Secure Anonymised Information Linkage (SAIL) databank. This unique platform pools data together from multiple sources; linking clinical, psychological, biological, genetic and health care factors to address a wide variety of research questions. This resource will continue to expand over the coming years in size, breadth and depth of data, with continued recruitment and additional measures planned.
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