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.
abstract: PsyCymru was initially established 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 are now additionally linking genetic data. PsyCymru aims to create 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.
authors.affiliation: College of Medicine, Swansea University, SA2 8PP, UK; Farr Institute of Health Informatics Research, CIPHER, College of Medicine, Swansea University, SA2 8PP, UK. Electronic address: k.r.lloyd@swansea.ac.uk.
authors.forename: Keith
authors.initials: K
authors.lastname: Lloyd
authors.affiliation: College of Medicine, Swansea University, SA2 8PP, UK; Farr Institute of Health Informatics Research, CIPHER, College of Medicine, Swansea University, SA2 8PP, UK.
authors.forename: Joanna
authors.initials: J
authors.lastname: McGregor
authors.affiliation: College of Medicine, Swansea University, SA2 8PP, UK; Farr Institute of Health Informatics Research, CIPHER, College of Medicine, Swansea University, SA2 8PP, UK.
authors.forename: Ann
authors.initials: A
authors.lastname: John
authors.affiliation: MRC Centre for Neuropsychiatric Genetics and Genomics, School of Medicine, Cardiff University, UK.
authors.forename: Nick
authors.initials: N
authors.lastname: Craddock
authors.affiliation: MRC Centre for Neuropsychiatric Genetics and Genomics, School of Medicine, Cardiff University, UK.
authors.forename: James T
authors.initials: JT
authors.lastname: Walters
authors.affiliation: MRC Centre for Neuropsychiatric Genetics and Genomics, School of Medicine, Cardiff University, UK.
authors.forename: David
authors.initials: D
authors.lastname: Linden
authors.affiliation: MRC Centre for Neuropsychiatric Genetics and Genomics, School of Medicine, Cardiff University, UK.
authors.forename: Ian
authors.initials: I
authors.lastname: Jones
authors.affiliation: School of Psychology, Bangor University, UK.
authors.forename: Richard
authors.initials: R
authors.lastname: Bentall
authors.affiliation: College of Medicine, Swansea University, SA2 8PP, UK; Farr Institute of Health Informatics Research, CIPHER, College of Medicine, Swansea University, SA2 8PP, UK.
authors.forename: Ronan A
authors.initials: RA
authors.lastname: Lyons
authors.affiliation: College of Medicine, Swansea University, SA2 8PP, UK; Farr Institute of Health Informatics Research, CIPHER, College of Medicine, Swansea University, SA2 8PP, UK.
authors.forename: David V
authors.initials: DV
authors.lastname: Ford
authors.affiliation: MRC Centre for Neuropsychiatric Genetics and Genomics, School of Medicine, Cardiff University, UK.
authors.forename: Michael J
authors.initials: MJ
authors.lastname: Owen
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D016208:Databases, Factual; D057286:Electronic Health Records; D005240:Feasibility Studies; D005260:Female; D006801:Humans; D007406:Interview, Psychological; D008297:Male; D008490:Medical Informatics; D008875:Middle Aged; D018579:Patient Selection; D011446:Prospective Studies; D011618:Psychotic Disorders / Q000453:epidemiology* / Q000235:genetics*; D012189:Retrospective Studies; D017422:Sequence Analysis, DNA; D011795:Surveys and Questionnaires; D014852:Wales / Q000453:epidemiology; D055815:Young Adult
keywords: Clinical questionnaires; E-cohort; Health informatics; Phenotype; Routine data