Enabling FAIR data stewardship in complex international multi-site studies: Data Operations for the Accelerating Medicines Partnership® Schizophrenia Program

Abstract Modern research management, particularly for publicly funded studies, assumes a data governance model in which grantees are considered stewards rather than owners of important data sets. Thus, there is an expectation that collected data are shared as widely as possible with the general rese...

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Main Authors: Tashrif Billah, Kang Ik K. Cho, Owen Borders, Yoonho Chung, Michaela Ennis, Grace R. Jacobs, Einat Liebenthal, Daniel H. Mathalon, Dheshan Mohandass, Spero C. Nicholas, Ofer Pasternak, Nora Penzel, Habiballah Rahimi Eichi, Phillip Wolff, Alan Anticevic, Kristen Laulette, Angela R. Nunez, Zailyn Tamayo, Kate Buccilli, Beau-Luke Colton, Dominic B. Dwyer, Larry Hendricks, Hok Pan Yuen, Jessica Spark, Sophie Tod, Holly Carrington, Justine T. Chen, Michael J. Coleman, Cheryl M. Corcoran, Anastasia Haidar, Omar John, Sinead Kelly, Patricia J. Marcy, Priya Matneja, Alessia McGowan, Susan E. Ray, Simone Veale, Inge Winter-Van Rossum, Jean Addington, Kelly A. Allott, Monica E. Calkins, Scott R. Clark, Ruben C. Gur, Michael P. Harms, Diana O. Perkins, Kosha Ruparel, William S. Stone, John Torous, Alison R. Yung, Eirini Zoupou, Paolo Fusar-Poli, Vijay A. Mittal, Jai L. Shah, Daniel H. Wolf, Guillermo Cecchi, Tina Kapur, Marek Kubicki, Kathryn Eve Lewandowski, Carrie E. Bearden, Patrick D. McGorry, René S. Kahn, John M. Kane, Barnaby Nelson, Scott W. Woods, Martha E. Shenton, the Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ), Justin T. Baker, Sylvain Bouix
Format: Article
Language:English
Published: Nature Portfolio 2025-04-01
Series:Schizophrenia
Online Access:https://doi.org/10.1038/s41537-025-00560-x
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author Tashrif Billah
Kang Ik K. Cho
Owen Borders
Yoonho Chung
Michaela Ennis
Grace R. Jacobs
Einat Liebenthal
Daniel H. Mathalon
Dheshan Mohandass
Spero C. Nicholas
Ofer Pasternak
Nora Penzel
Habiballah Rahimi Eichi
Phillip Wolff
Alan Anticevic
Kristen Laulette
Angela R. Nunez
Zailyn Tamayo
Kate Buccilli
Beau-Luke Colton
Dominic B. Dwyer
Larry Hendricks
Hok Pan Yuen
Jessica Spark
Sophie Tod
Holly Carrington
Justine T. Chen
Michael J. Coleman
Cheryl M. Corcoran
Anastasia Haidar
Omar John
Sinead Kelly
Patricia J. Marcy
Priya Matneja
Alessia McGowan
Susan E. Ray
Simone Veale
Inge Winter-Van Rossum
Jean Addington
Kelly A. Allott
Monica E. Calkins
Scott R. Clark
Ruben C. Gur
Michael P. Harms
Diana O. Perkins
Kosha Ruparel
William S. Stone
John Torous
Alison R. Yung
Eirini Zoupou
Paolo Fusar-Poli
Vijay A. Mittal
Jai L. Shah
Daniel H. Wolf
Guillermo Cecchi
Tina Kapur
Marek Kubicki
Kathryn Eve Lewandowski
Carrie E. Bearden
Patrick D. McGorry
René S. Kahn
John M. Kane
Barnaby Nelson
Scott W. Woods
Martha E. Shenton
the Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ)
Justin T. Baker
Sylvain Bouix
author_facet Tashrif Billah
Kang Ik K. Cho
Owen Borders
Yoonho Chung
Michaela Ennis
Grace R. Jacobs
Einat Liebenthal
Daniel H. Mathalon
Dheshan Mohandass
Spero C. Nicholas
Ofer Pasternak
Nora Penzel
Habiballah Rahimi Eichi
Phillip Wolff
Alan Anticevic
Kristen Laulette
Angela R. Nunez
Zailyn Tamayo
Kate Buccilli
Beau-Luke Colton
Dominic B. Dwyer
Larry Hendricks
Hok Pan Yuen
Jessica Spark
Sophie Tod
Holly Carrington
Justine T. Chen
Michael J. Coleman
Cheryl M. Corcoran
Anastasia Haidar
Omar John
Sinead Kelly
Patricia J. Marcy
Priya Matneja
Alessia McGowan
Susan E. Ray
Simone Veale
Inge Winter-Van Rossum
Jean Addington
Kelly A. Allott
Monica E. Calkins
Scott R. Clark
Ruben C. Gur
Michael P. Harms
Diana O. Perkins
Kosha Ruparel
William S. Stone
John Torous
Alison R. Yung
Eirini Zoupou
Paolo Fusar-Poli
Vijay A. Mittal
Jai L. Shah
Daniel H. Wolf
Guillermo Cecchi
Tina Kapur
Marek Kubicki
Kathryn Eve Lewandowski
Carrie E. Bearden
Patrick D. McGorry
René S. Kahn
John M. Kane
Barnaby Nelson
Scott W. Woods
Martha E. Shenton
the Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ)
Justin T. Baker
Sylvain Bouix
author_sort Tashrif Billah
collection DOAJ
description Abstract Modern research management, particularly for publicly funded studies, assumes a data governance model in which grantees are considered stewards rather than owners of important data sets. Thus, there is an expectation that collected data are shared as widely as possible with the general research community. This presents problems in complex studies that involve sensitive health information. The latter requires balancing participant privacy with the needs of the research community. Here, we report on the data operation ecosystem crafted for the Accelerating Medicines Partnership® Schizophrenia project, an international observational study of young individuals at clinical high risk for developing a psychotic disorder. We review data capture systems, data dictionaries, organization principles, data flow, security, quality control protocols, data visualization, monitoring, and dissemination through the NIMH Data Archive platform. We focus on the interconnectedness of these steps, where our goal is to design a seamless data flow and an alignment with the FAIR (Findability, Accessibility, Interoperability, and Reusability) principles while balancing local regulatory and ethical considerations. This process-oriented approach leverages automated pipelines for data flow to enhance data quality, speed, and collaboration, underscoring the project’s contribution to advancing research practices involving multisite studies of sensitive mental health conditions. An important feature is the data’s close-to-real-time quality assessment (QA) and quality control (QC). The focus on close-to-real-time QA/QC makes it possible for a subject to redo a testing session, as well as facilitate course corrections to prevent repeating errors in future data acquisition. Watch Dr. Sylvain Bouix discuss his work and this article: https://vimeo.com/1025555648 .
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spelling doaj-art-e5254418053e4e38b3e50d08ea47e9d92025-08-20T03:07:41ZengNature PortfolioSchizophrenia2754-69932025-04-0111111110.1038/s41537-025-00560-xEnabling FAIR data stewardship in complex international multi-site studies: Data Operations for the Accelerating Medicines Partnership® Schizophrenia ProgramTashrif Billah0Kang Ik K. Cho1Owen Borders2Yoonho Chung3Michaela Ennis4Grace R. Jacobs5Einat Liebenthal6Daniel H. Mathalon7Dheshan Mohandass8Spero C. Nicholas9Ofer Pasternak10Nora Penzel11Habiballah Rahimi Eichi12Phillip Wolff13Alan Anticevic14Kristen Laulette15Angela R. Nunez16Zailyn Tamayo17Kate Buccilli18Beau-Luke Colton19Dominic B. Dwyer20Larry Hendricks21Hok Pan Yuen22Jessica Spark23Sophie Tod24Holly Carrington25Justine T. Chen26Michael J. Coleman27Cheryl M. Corcoran28Anastasia Haidar29Omar John30Sinead Kelly31Patricia J. Marcy32Priya Matneja33Alessia McGowan34Susan E. Ray35Simone Veale36Inge Winter-Van Rossum37Jean Addington38Kelly A. Allott39Monica E. Calkins40Scott R. Clark41Ruben C. Gur42Michael P. Harms43Diana O. Perkins44Kosha Ruparel45William S. Stone46John Torous47Alison R. Yung48Eirini Zoupou49Paolo Fusar-Poli50Vijay A. Mittal51Jai L. Shah52Daniel H. Wolf53Guillermo Cecchi54Tina Kapur55Marek Kubicki56Kathryn Eve Lewandowski57Carrie E. Bearden58Patrick D. McGorry59René S. Kahn60John M. Kane61Barnaby Nelson62Scott W. Woods63Martha E. Shenton64the Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ)Justin T. Baker65Sylvain Bouix66Department of Psychiatry, Brigham and Women’s Hospital and Harvard Medical SchoolDepartment of Psychiatry, Brigham and Women’s Hospital and Harvard Medical SchoolDepartment of Psychiatry, Massachusetts General Hospital and Harvard Medical SchoolInstitute for Technology in Psychiatry, McLean HospitalHarvard Medical SchoolDepartment of Psychiatry, Brigham and Women’s Hospital and Harvard Medical SchoolInstitute for Technology in Psychiatry, McLean HospitalDepartment of Psychiatry and Behavioral Sciences and Weill Institute for Neurosciences, University of California San FranciscoDepartment of Psychiatry, Massachusetts General Hospital and Harvard Medical SchoolDepartment of Psychiatry and Behavioral Sciences and Weill Institute for Neurosciences, University of California San FranciscoDepartment of Psychiatry, Brigham and Women’s Hospital and Harvard Medical SchoolDepartment of Psychiatry, Massachusetts General Hospital and Harvard Medical SchoolInstitute for Technology in Psychiatry, McLean HospitalDepartment of Psychology, Emory UniversityDepartment of Psychiatry, Yale University School of MedicineDepartment of Psychology, University of California Los AngelesDepartment of Psychiatry, Yale University School of MedicineDepartment of Psychiatry, Yale University School of MedicineOrygenOrygenOrygenOrygenOrygenOrygenOrygenDepartment of Psychiatry, Brigham and Women’s Hospital and Harvard Medical SchoolDepartment of Psychiatry, Massachusetts General Hospital and Harvard Medical SchoolDepartment of Psychiatry, Brigham and Women’s Hospital and Harvard Medical SchoolDepartment of Psychiatry, Icahn School of Medicine at Mount SinaiDepartment of Psychiatry, Brigham and Women’s Hospital and Harvard Medical SchoolDepartment of Psychiatry, Massachusetts General Hospital and Harvard Medical SchoolDepartment of Psychiatry, Brigham and Women’s Hospital and Harvard Medical SchoolNorthwell HealthNorthwell HealthDepartment of Psychiatry, Icahn School of Medicine at Mount SinaiNorthwell HealthDepartment of Psychiatry, Brigham and Women’s Hospital and Harvard Medical SchoolDepartment of Psychiatry, Icahn School of Medicine at Mount SinaiDepartment of Psychiatry, Hotchkiss Brain Institute, University of CalgaryOrygenDepartment of Psychiatry, Perelman School of Medicine, University of PennsylvaniaThe Discipline of Psychiatry, University of AdelaideDepartment of Psychiatry, Perelman School of Medicine, University of PennsylvaniaWashington University School of MedicineDepartment of Psychiatry, University of North Carolina at Chapel HillDepartment of Psychiatry, Perelman School of Medicine, University of PennsylvaniaDepartment of Psychiatry, Beth Israel Deaconess Medical Center and Harvard Medical SchoolDepartment of Psychiatry, Beth Israel Deaconess Medical Center and Harvard Medical SchoolInstitute of Mental and Physical Health and Clinical Translation (IMPACT), Deakin UniversityDepartment of Psychiatry, Perelman School of Medicine, University of PennsylvaniaDepartment of Psychosis Studies, King’s CollegeDepartment of Psychology, Northwestern UniversityDouglas Research CentreDepartment of Psychiatry, Perelman School of Medicine, University of PennsylvaniaIBM T.J. Watson Research CenterDepartment of Psychiatry, Brigham and Women’s Hospital and Harvard Medical SchoolDepartment of Psychiatry, Brigham and Women’s Hospital and Harvard Medical SchoolDepartment of Psychiatry, Harvard Medical SchoolDepartment of Psychology, University of California Los AngelesOrygenDepartment of Psychiatry, Icahn School of Medicine at Mount SinaiDepartment of Psychiatry, Donald and Barbara Zucker School of Medicine at Hofstra/NorthwellOrygenDepartment of Psychiatry, Yale University School of MedicineDepartment of Psychiatry, Brigham and Women’s Hospital and Harvard Medical SchoolInstitute for Technology in Psychiatry, McLean HospitalDepartment of Psychiatry, Brigham and Women’s Hospital and Harvard Medical SchoolAbstract Modern research management, particularly for publicly funded studies, assumes a data governance model in which grantees are considered stewards rather than owners of important data sets. Thus, there is an expectation that collected data are shared as widely as possible with the general research community. This presents problems in complex studies that involve sensitive health information. The latter requires balancing participant privacy with the needs of the research community. Here, we report on the data operation ecosystem crafted for the Accelerating Medicines Partnership® Schizophrenia project, an international observational study of young individuals at clinical high risk for developing a psychotic disorder. We review data capture systems, data dictionaries, organization principles, data flow, security, quality control protocols, data visualization, monitoring, and dissemination through the NIMH Data Archive platform. We focus on the interconnectedness of these steps, where our goal is to design a seamless data flow and an alignment with the FAIR (Findability, Accessibility, Interoperability, and Reusability) principles while balancing local regulatory and ethical considerations. This process-oriented approach leverages automated pipelines for data flow to enhance data quality, speed, and collaboration, underscoring the project’s contribution to advancing research practices involving multisite studies of sensitive mental health conditions. An important feature is the data’s close-to-real-time quality assessment (QA) and quality control (QC). The focus on close-to-real-time QA/QC makes it possible for a subject to redo a testing session, as well as facilitate course corrections to prevent repeating errors in future data acquisition. Watch Dr. Sylvain Bouix discuss his work and this article: https://vimeo.com/1025555648 .https://doi.org/10.1038/s41537-025-00560-x
spellingShingle Tashrif Billah
Kang Ik K. Cho
Owen Borders
Yoonho Chung
Michaela Ennis
Grace R. Jacobs
Einat Liebenthal
Daniel H. Mathalon
Dheshan Mohandass
Spero C. Nicholas
Ofer Pasternak
Nora Penzel
Habiballah Rahimi Eichi
Phillip Wolff
Alan Anticevic
Kristen Laulette
Angela R. Nunez
Zailyn Tamayo
Kate Buccilli
Beau-Luke Colton
Dominic B. Dwyer
Larry Hendricks
Hok Pan Yuen
Jessica Spark
Sophie Tod
Holly Carrington
Justine T. Chen
Michael J. Coleman
Cheryl M. Corcoran
Anastasia Haidar
Omar John
Sinead Kelly
Patricia J. Marcy
Priya Matneja
Alessia McGowan
Susan E. Ray
Simone Veale
Inge Winter-Van Rossum
Jean Addington
Kelly A. Allott
Monica E. Calkins
Scott R. Clark
Ruben C. Gur
Michael P. Harms
Diana O. Perkins
Kosha Ruparel
William S. Stone
John Torous
Alison R. Yung
Eirini Zoupou
Paolo Fusar-Poli
Vijay A. Mittal
Jai L. Shah
Daniel H. Wolf
Guillermo Cecchi
Tina Kapur
Marek Kubicki
Kathryn Eve Lewandowski
Carrie E. Bearden
Patrick D. McGorry
René S. Kahn
John M. Kane
Barnaby Nelson
Scott W. Woods
Martha E. Shenton
the Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ)
Justin T. Baker
Sylvain Bouix
Enabling FAIR data stewardship in complex international multi-site studies: Data Operations for the Accelerating Medicines Partnership® Schizophrenia Program
Schizophrenia
title Enabling FAIR data stewardship in complex international multi-site studies: Data Operations for the Accelerating Medicines Partnership® Schizophrenia Program
title_full Enabling FAIR data stewardship in complex international multi-site studies: Data Operations for the Accelerating Medicines Partnership® Schizophrenia Program
title_fullStr Enabling FAIR data stewardship in complex international multi-site studies: Data Operations for the Accelerating Medicines Partnership® Schizophrenia Program
title_full_unstemmed Enabling FAIR data stewardship in complex international multi-site studies: Data Operations for the Accelerating Medicines Partnership® Schizophrenia Program
title_short Enabling FAIR data stewardship in complex international multi-site studies: Data Operations for the Accelerating Medicines Partnership® Schizophrenia Program
title_sort enabling fair data stewardship in complex international multi site studies data operations for the accelerating medicines partnership r schizophrenia program
url https://doi.org/10.1038/s41537-025-00560-x
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