Vera Brink, Natalia Tiles-Sar, Hannah Jongsma, Catheleine van Driel, Craig Morgan, Bart Lestestuiver, Ellen Visser, Erwin Veermans, Morris A Swertz, Erna van 't Hag, Carsten Hjorthøj, Merete Nordentoft, Nikolai Albert, Stynke Castelein, Wim Veling
{"title":"The International Psychosis Epidemiology Consortium Virtual Databank-A Platform for Data Harmonization and Federated Analysis of Psychosis Cohorts.","authors":"Vera Brink, Natalia Tiles-Sar, Hannah Jongsma, Catheleine van Driel, Craig Morgan, Bart Lestestuiver, Ellen Visser, Erwin Veermans, Morris A Swertz, Erna van 't Hag, Carsten Hjorthøj, Merete Nordentoft, Nikolai Albert, Stynke Castelein, Wim Veling","doi":"10.1093/schbul/sbaf094","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Harmonization of research methodology, measures, and existing cohort data is needed to advance the field of psychosis epidemiology. The International Psychosis Epidemiology Consortium (IPEC) has been initiated to create a data-sharing platform for psychosis cohorts globally and provide infrastructure for data harmonization. This profile paper describes the design and data harmonization process, and the technical, ethical, and legal steps taken to set up the IPEC virtual databank, as well as the organizational structure we developed for IPEC.</p><p><strong>Study design: </strong>An international group of researchers, collaborating in the Schizophrenia International Research Society-Epidemiology Research Harmonization Group, drafted inclusion and exclusion criteria for participating cohorts and selected, among others, sociodemographic, socioeconomic, and clinical variables for harmonization. Drawing upon current guidelines for data harmonization, a guideline specifically for psychosis cohorts and a software architecture for federated analysis were developed. Finally, as proof of principle, all steps of data harmonization were applied to 2 cohorts, and summary statistics on core variables were calculated.</p><p><strong>Study results: </strong>A platform for remote and nondisclosive analyses of multisite individual-level data and a data catalog with information on IPEC's variables and harmonization procedures were built. The 6-step design, harmonization procedure, ethical and legal procedures, future organizational structure and how to join IPEC were described. Data harmonization of variables of the 2 proof-of-principle cohorts was successful.</p><p><strong>Conclusions: </strong>IPEC has created a virtual databank for individual-level data of psychosis cohorts and implemented a technical infrastructure for remote federated analysis. This databank facilitates future large-scale collaborative international psychosis epidemiology research.</p>","PeriodicalId":21530,"journal":{"name":"Schizophrenia Bulletin","volume":" ","pages":""},"PeriodicalIF":5.3000,"publicationDate":"2025-07-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Schizophrenia Bulletin","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1093/schbul/sbaf094","RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"PSYCHIATRY","Score":null,"Total":0}
引用次数: 0
Abstract
Background: Harmonization of research methodology, measures, and existing cohort data is needed to advance the field of psychosis epidemiology. The International Psychosis Epidemiology Consortium (IPEC) has been initiated to create a data-sharing platform for psychosis cohorts globally and provide infrastructure for data harmonization. This profile paper describes the design and data harmonization process, and the technical, ethical, and legal steps taken to set up the IPEC virtual databank, as well as the organizational structure we developed for IPEC.
Study design: An international group of researchers, collaborating in the Schizophrenia International Research Society-Epidemiology Research Harmonization Group, drafted inclusion and exclusion criteria for participating cohorts and selected, among others, sociodemographic, socioeconomic, and clinical variables for harmonization. Drawing upon current guidelines for data harmonization, a guideline specifically for psychosis cohorts and a software architecture for federated analysis were developed. Finally, as proof of principle, all steps of data harmonization were applied to 2 cohorts, and summary statistics on core variables were calculated.
Study results: A platform for remote and nondisclosive analyses of multisite individual-level data and a data catalog with information on IPEC's variables and harmonization procedures were built. The 6-step design, harmonization procedure, ethical and legal procedures, future organizational structure and how to join IPEC were described. Data harmonization of variables of the 2 proof-of-principle cohorts was successful.
Conclusions: IPEC has created a virtual databank for individual-level data of psychosis cohorts and implemented a technical infrastructure for remote federated analysis. This databank facilitates future large-scale collaborative international psychosis epidemiology research.
期刊介绍：
Schizophrenia Bulletin seeks to review recent developments and empirically based hypotheses regarding the etiology and treatment of schizophrenia. We view the field as broad and deep, and will publish new knowledge ranging from the molecular basis to social and cultural factors. We will give new emphasis to translational reports which simultaneously highlight basic neurobiological mechanisms and clinical manifestations. Some of the Bulletin content is invited as special features or manuscripts organized as a theme by special guest editors. Most pages of the Bulletin are devoted to unsolicited manuscripts of high quality that report original data or where we can provide a special venue for a major study or workshop report. Supplement issues are sometimes provided for manuscripts reporting from a recent conference.
求助内容：
应助结果提醒方式：
京公网安备 11010802042870号
