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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; Nick Craddock; James T. Walters; David Linden; Ian Jones; Richard Bentall; Ronan A. Lyons; David V. Ford; Michael J. Owen

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

Swansea University Author: Lloyd, Keith

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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: 09209964
Published: 2015
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URI: https://cronfa.swan.ac.uk/Record/cronfa22303
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spelling 2016-12-21T16:51:54Z 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 Keith Lloyd Keith Lloyd true 0000-0002-1440-4124 false a13aaa0df9045c205e82ed3b95d18c10 f11a1eef09b552c9c89e49462f6e47e0 eksi00S5bUL8BWYmy1QyUQgr5y2nBRz3haj4DmVVDsQ= 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 09209964 E-cohort; Health informatics; Routine data, Psychosis, phenotype, genotype 29 6 2015 2015-06-29 10.1016/j.schres.2015.05.036 http://www.sciencedirect.com/science/article/pii/S0920996415003096 Swansea University Medical School Medicine CMED PMSC Patient & population health and informatics 2015 Jun 29. pii: S0920-9964 None 2016-12-21T16:51:54Z 2015-07-07T09:23:41Z Swansea University Medical School Medicine Keith Lloyd 1 Joanna McGregor 2 Ann John 3 Nick Craddock 4 James T. Walters 5 David Linden 6 Ian Jones 7 Richard Bentall 8 Ronan A. Lyons 9 David V. Ford 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
Lloyd, Keith
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
author_id_str_mv a13aaa0df9045c205e82ed3b95d18c10
author_id_fullname_str_mv a13aaa0df9045c205e82ed3b95d18c10_***_Lloyd, Keith
author Lloyd, Keith
author2 Keith Lloyd
Joanna McGregor
Ann John
Nick Craddock
James T. Walters
David Linden
Ian Jones
Richard Bentall
Ronan A. Lyons
David V. Ford
Michael J. Owen
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container_title Schizophrenia Research
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container_issue 1-3
container_start_page 131
publishDate 2015
institution Swansea University
issn 09209964
doi_str_mv 10.1016/j.schres.2015.05.036
college_str Swansea University Medical School
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hierarchy_top_title Swansea University Medical School
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hierarchy_parent_title Swansea University Medical School
department_str Medicine{{{_:::_}}}Swansea University Medical School{{{_:::_}}}Medicine
url http://www.sciencedirect.com/science/article/pii/S0920996415003096
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researchgroup_str Patient & population health and informatics
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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