Evidence map›Paper›PMID 40180978›Full record

ArticleSchizophrenia (Heidelberg, Germany)2025

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

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 and 58 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Schizophrenia (Heidelberg, Germany), 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

68 authors.

Tashrif Billah *Department of Psychiatry, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.
Kang Ik K Cho *Department of Psychiatry, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.ORCID http://orcid.org/0000-0001-7135-3848
Owen BordersDepartment of Psychiatry, Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA.
Yoonho ChungInstitute for Technology in Psychiatry, McLean Hospital, Belmont, MA, USA.
Michaela EnnisHarvard Medical School, Boston, MA, USA.
Grace R JacobsDepartment of Psychiatry, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.ORCID http://orcid.org/0000-0001-9961-6507
Einat LiebenthalInstitute for Technology in Psychiatry, McLean Hospital, Belmont, MA, USA.
Daniel H MathalonDepartment of Psychiatry and Behavioral Sciences and Weill Institute for Neurosciences, University of California San Francisco, San Francisco, CA, USA.
Dheshan MohandassDepartment of Psychiatry, Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA.ORCID http://orcid.org/0009-0002-5150-0542
Spero C NicholasDepartment of Psychiatry and Behavioral Sciences and Weill Institute for Neurosciences, University of California San Francisco, San Francisco, CA, USA.
Ofer PasternakDepartment of Psychiatry, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.
Nora PenzelDepartment of Psychiatry, Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA.ORCID http://orcid.org/0000-0003-1624-386X
Habiballah Rahimi EichiInstitute for Technology in Psychiatry, McLean Hospital, Belmont, MA, USA.
Phillip WolffDepartment of Psychology, Emory University, Atlanta, GA, USA.
Alan AnticevicDepartment of Psychiatry, Yale University School of Medicine, New Haven, CT, USA.
Kristen LauletteDepartment of Psychology, University of California Los Angeles, Los Angeles, CA, USA.
Angela R NunezDepartment of Psychiatry, Yale University School of Medicine, New Haven, CT, USA.
Zailyn TamayoDepartment of Psychiatry, Yale University School of Medicine, New Haven, CT, USA.
Kate BuccilliOrygen, Parkville, VIC, Australia.
Beau-Luke ColtonOrygen, Parkville, VIC, Australia.
Dominic B DwyerOrygen, Parkville, VIC, Australia.ORCID http://orcid.org/0000-0003-3949-5867
Larry HendricksOrygen, Parkville, VIC, Australia.
Hok Pan YuenOrygen, Parkville, VIC, Australia.ORCID http://orcid.org/0000-0002-1237-1322
Jessica SparkOrygen, Parkville, VIC, Australia.
Sophie TodOrygen, Parkville, VIC, Australia.
Holly CarringtonDepartment of Psychiatry, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.
Justine T ChenDepartment of Psychiatry, Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA.
Michael J ColemanDepartment of Psychiatry, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.
Cheryl M CorcoranDepartment of Psychiatry, Icahn School of Medicine at Mount Sinai, New York, NY, USA.ORCID http://orcid.org/0000-0002-8902-4353
Anastasia HaidarDepartment of Psychiatry, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.
Omar JohnDepartment of Psychiatry, Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA.ORCID http://orcid.org/0009-0008-3745-7270
Sinead KellyDepartment of Psychiatry, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.
Patricia J MarcyNorthwell Health, Glen Oaks, NY, USA.
Priya MatnejaNorthwell Health, Glen Oaks, NY, USA.
Alessia McGowanDepartment of Psychiatry, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
Susan E RayNorthwell Health, Glen Oaks, NY, USA.
Simone VealeDepartment of Psychiatry, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.
Inge Winter-Van RossumDepartment of Psychiatry, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
Jean AddingtonDepartment of Psychiatry, Hotchkiss Brain Institute, University of Calgary, Calgary, AB, Canada.ORCID http://orcid.org/0000-0002-8298-0756
Kelly A AllottOrygen, Parkville, VIC, Australia.ORCID http://orcid.org/0000-0002-0640-4634
Monica E CalkinsDepartment of Psychiatry, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Scott R ClarkThe Discipline of Psychiatry, University of Adelaide, Adelaide, SA, Australia.ORCID http://orcid.org/0000-0003-1640-5611
Ruben C GurDepartment of Psychiatry, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Michael P HarmsWashington University School of Medicine, St. Louis, MO, USA.ORCID http://orcid.org/0000-0001-7945-036X
Diana O PerkinsDepartment of Psychiatry, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.ORCID http://orcid.org/0000-0001-9396-2206
Kosha RuparelDepartment of Psychiatry, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
William S StoneDepartment of Psychiatry, Beth Israel Deaconess Medical Center and Harvard Medical School, Boston, MA, USA.
John TorousDepartment of Psychiatry, Beth Israel Deaconess Medical Center and Harvard Medical School, Boston, MA, USA.ORCID http://orcid.org/0000-0002-5362-7937
Alison R YungInstitute of Mental and Physical Health and Clinical Translation (IMPACT), Deakin University, Geelong, VIC, Australia.ORCID http://orcid.org/0000-0002-0401-9791
Eirini ZoupouDepartment of Psychiatry, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Paolo Fusar-PoliDepartment of Psychosis Studies, King's College, London, UK.
Vijay A MittalDepartment of Psychology, Northwestern University, Evanston, IL, USA.ORCID http://orcid.org/0000-0001-9017-5119
Jai L ShahDouglas Research Centre, Montreal, QC, Canada.ORCID http://orcid.org/0000-0002-7549-6990
Daniel H WolfDepartment of Psychiatry, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.ORCID http://orcid.org/0000-0002-9731-8781
Guillermo CecchiIBM T.J. Watson Research Center, Yorktown Heights, NY, USA.ORCID http://orcid.org/0000-0003-1013-8348
Tina KapurDepartment of Psychiatry, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.
Marek KubickiDepartment of Psychiatry, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.ORCID http://orcid.org/0000-0002-3989-8212
Kathryn Eve LewandowskiDepartment of Psychiatry, Harvard Medical School, Boston, MA, USA.ORCID http://orcid.org/0000-0003-1477-6187
Carrie E BeardenDepartment of Psychology, University of California Los Angeles, Los Angeles, CA, USA.ORCID http://orcid.org/0000-0002-8516-923X
Patrick D McGorryOrygen, Parkville, VIC, Australia.
René S KahnDepartment of Psychiatry, Icahn School of Medicine at Mount Sinai, New York, NY, USA.ORCID http://orcid.org/0000-0001-5909-8004
John M KaneDepartment of Psychiatry, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, Hempstead, NY, USA.
Barnaby NelsonOrygen, Parkville, VIC, Australia.
Scott W WoodsDepartment of Psychiatry, Yale University School of Medicine, New Haven, CT, USA.ORCID http://orcid.org/0000-0002-3103-5228
Martha E ShentonDepartment of Psychiatry, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.ORCID http://orcid.org/0000-0003-4235-7879
Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ)
Justin T BakerInstitute for Technology in Psychiatry, McLean Hospital, Belmont, MA, USA.
Sylvain BouixDepartment of Psychiatry, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA. sylvain.bouix@etsmtl.ca.ORCID http://orcid.org/0000-0003-1326-6054

Funding

ProNET: Psychosis-Risk Outcomes NetworkU01MH124639 · NIMH · YALE UNIVERSITY · PI CARRIE E BEARDEN, JOHN M KANE · 2020 to 2026
$81.2M
Psychosis Risk Evaluation, Data Integration and Computational Technologies (PREDICT): Data Processing, Analysis, and Coordination CenterU24MH124629 · NIMH · BRIGHAM AND WOMEN'S HOSPITAL · PI Rene S. Kahn, Martha E. Shenton · 2020 to 2026
$32.6M
Trajectories and Predictors in the Clinical High Risk for Psychosis Population: Prediction Scientific Global Consortium (PRESCIENT)U01MH124631 · NIMH · UNIVERSITY OF MELBOURNE · PI Christopher Barnaby Nelson · 2020 to 2026
$30.4M
Penn Mental Health AIDS Research CenterP30MH097488 · NIMH · UNIVERSITY OF PENNSYLVANIA · PI Cagla Akay Espinoza · 2013 to 2026
$23.5M
Canada Research Chairs (Chaires de recherche du Canada) CRC-2022-00183Gouvernement du Canada | Natural Sciences and Engineering Research Council of Canada (Conseil de Recherches en Sciences Naturelles et en Génie du Canada) RGPIN-2023-05443NIMH NIH HHS P30 MH097488NIMH NIH HHS U01 MH124631NIMH NIH HHS U01 MH124639NIMH NIH HHS U24 MH124629U.S. Department of Health & Human Services | NIH | National Institute of Mental Health (NIMH) U01MH124631U.S. Department of Health & Human Services | NIH | National Institute of Mental Health (NIMH) U01MH124639U.S. Department of Health & Human Services | NIH | National Institute of Mental Health (NIMH) U24MH124629Wellcome Trust
6 · The paper itself

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 .

Identifiers

PMID40180978
PMCPMC11968805

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