Research Infrastructures and Registries

Articles published in this theme: 82 (scroll down to load remaining articles)

2026

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Improving Registration and Dataflows Between Pediatric Oncology Clinics and the Childhood Cancer Registry of Switzerland: Protocol for SwissPedCancer Quality Assurance Study

Yara Shoman, Lorenz Leuenberger, Grit Sommer, Julia Anna Bielicki, Pierluigi Brazzola, Sophia della Valle, Manuel Diezi, Daniel Drozdov, Fabienne Gumy-Pause, Ana Guerreiro Stücklin, Ursula M Kuehnel, Katrin Scheinemann, Christina Schindera, Freimut Schilling, Nicolas Waespe, Ben D Spycher, Luregn J Schlapbach, Claudia E Kuehni, Fabiën N Belle, SwissPedHealth Consortium

JMIR Res Protoc 2026 (Mar 10); 15:e87007

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The National Dental Practice-Based Research Network Dental Implant Restoration Registry to Evaluate Dental Implant Outcomes in Community Practice Settings: Protocol for a Prospective Observational Study

Joana Cunha-Cruz, Danyelle Barton, David Cochran, Phillip Crawford, Farahnaz Fahimipour, Ellen Funkhouser, Nicolaas C Geurs, Gregg H Gilbert, James D Johnson, Ning Smith, Kaur Maninder, Sarah Jane Startley, Kimberly Stewart, Lisa Waiwaiole, National Dental PBRN Collaborative Group

JMIR Res Protoc 2026 (Feb 27); 15:e82795

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Temporal Annotation of German Clinical Language in Real and Synthetic Clinical Documents: Corpus Development and Baseline Tagger Validation Study

Luise Modersohn, Udo Hahn

J Med Internet Res 2026 (Feb 25); 28:e71458

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Assessing the Evolution and Influence of Medical Open Databases on Biomedical Research and Health Care Innovation: A 25-Year Perspective With a Focus on Privacy and Privacy-Enhancing Technologies

Albert Yang, Mei-Lien Pan, Henry Horng-Shing Lu, Chung-Yueh Lien, Da-Wei Wang, Chih-Hsiung Chen, Der-Cherng Tarng, Dau-Ming Niu, Shih-Hwa Chiou, Chun-Ying Wu, Ying - Chou Sun, Shih-Ann Chen, Shuu-Jiun Wang, Wayne Huey-Herng Sheu, Chi-Hung Lin

J Med Internet Res 2026 (Jan 30); 28:e58954

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2025

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Development and Implementation of an Internal Quality Control and External Quality Assessment Information System for a Regional Medical Laboratory Center: Pilot Design and Implementation Study

Dayang Chen, Hongmei Mo, Yingying Zhang, Junlong Qin, Lijun Zhang, Changxian Jiang, Fuming Li, Xiuming Zhang, Tong Ou

JMIR Form Res 2025 (Dec 09); 9:e77043

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The Clinical Registry of Childhood Asthma (CRCA) Elucidating Early-Life Asthma: Cross-Sectional Analysis of a Prospective, Longitudinal, and Digitally Enhanced Real-World Cohort

Juan Li, Luo Ren, Jiao Liu, Yuyi Tang, Run Wang, Peixin Yang, Jing Zhao, Xiao Chen, Zheng Xiang, Wen Zhong, Na Zang, Dapeng Chen, Heping Fang, Enmei Liu

J Med Internet Res 2025 (Oct 30); 27:e78693

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Reality Check: The Aspirations of the European Health Data Space Amidst Challenges in Decentralized Data Analysis

Holger Fröhlich, Anne Funck Hansen, Mika Hilvo, Gunther Jansen, Sumit Madan, Sobhan Moazemi, Sanziana Negreanu, Venkata Satagopam, Phil Gribbon, Christian Muehlendyck

J Med Internet Res 2025 (Sep 19); 27:e76491

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Advancing Real-World Evidence Through a Federated Health Data Network (EHDEN): Descriptive Study

Clair Blacketer, Martijn J Schuemie, Maxim Moinat, Erica A Voss, Montse Camprubi, Peter R Rijnbeek, Patrick B Ryan

J Med Internet Res 2025 (Aug 07); 27:e74119

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Performance of Natural Language Processing versus International Classification of Diseases Codes in Building Registries for Patients With Fall Injury: Retrospective Analysis

Atta Taseh, Souri Sasanfar, Michelle Chan, Evan Sirls, Ara Nazarian, Kayhan Batmanghelich, Jonathan F Bean, Soheil Ashkani-Esfahani

JMIR Med Inform 2025 (Jul 14); 13:e66973

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Strengthening Immunization Data: Protocol for the Evaluation of an Electronic Immunization Register

Meru Sheel, Cyra Patel, Gemma Saravanos, Michelle Lynch, Adeline Tinessia, Niramonh Chanlivong, Mathida Thongseng, Praveena Gunaratnam, Chansay Pathammavong, Kongxay Phounphenghack, Yongjoon Park, Sisouveth Norasingh, Dheeraj Bhatt, Nyambat Batmunkh, Marcela Contreras, M. Carolina Danovaro-Holliday

JMIR Res Protoc 2025 (Jun 19); 14:e65663

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Toward a Domain-Overarching Metadata Schema for Making Health Research Studies FAIR (Findable, Accessible, Interoperable, and Reusable): Development of the NFDI4Health Metadata Schema

Haitham Abaza, Aliaksandra Shutsko, Sophie A I Klopfenstein, Carina N Vorisek, Carsten Oliver Schmidt, Claudia Brünings-Kuppe, Vera Clemens, Johannes Darms, Sabine Hanß, Timm Intemann, Franziska Jannasch, Elisa Kasbohm, Birte Lindstädt, Matthias Löbe, Katharina Nimptsch, Ute Nöthlings, Marisabel Gonzalez Ocanto, Tracy Bonsu Osei, Ines Perrar, Manuela Peters, Tobias Pischon, Ulrich Sax, Matthias B Schulze, Florian Schwarz, Carolina Schwedhelm, Sylvia Thun, Dagmar Waltemath, Atinkut A Zeleke, Wolfgang Müller, Martin Golebiewski

JMIR Med Inform 2025 (May 21); 13:e63906

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Transformer-Based Language Models for Group Randomized Trial Classification in Biomedical Literature: Model Development and Validation

Elaheh Aghaarabi, David Murray

JMIR Med Inform 2025 (May 09); 13:e63267

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Patient-Related Metadata Reported in Sequencing Studies of SARS-CoV-2: Protocol for a Scoping Review and Bibliometric Analysis

Karen O'Connor, Davy Weissenbacher, Amir Elyaderani, Ebbing Lautenbach, Matthew Scotch, Graciela Gonzalez-Hernandez

JMIR Res Protoc 2025 (Apr 22); 14:e58567

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Ensuring General Data Protection Regulation Compliance and Security in a Clinical Data Warehouse From a University Hospital: Implementation Study

Christine Riou, Mohamed El Azzouzi, Anne Hespel, Emeric Guillou, Gouenou Coatrieux, Marc Cuggia

JMIR Med Inform 2025 (Apr 17); 13:e63754

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Estimating the Burden of Common Mental Disorders Attributable to Lifestyle Factors: Protocol for the Global Burden of Disease Lifestyle and Mental Disorder (GLAD) Project

Deborah N Ashtree, Rebecca Orr, Melissa M Lane, Tasnime N Akbaraly, Marialaura Bonaccio, Simona Costanzo, Alessandro Gialluisi, Giuseppe Grosso, Camille Lassale, Daniela Martini, Lorenzo Monasta, Damian Santomauro, Jeffrey Stanaway, Felice N Jacka, Adrienne O'Neil

JMIR Res Protoc 2025 (Mar 14); 14:e65576

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Assessing Total Hip Arthroplasty Outcomes and Generating an Orthopedic Research Outcome Database via a Natural Language Processing Pipeline: Development and Validation Study

Nicholas H Mast, Clara L. Oeste, Dries Hens

JMIR Med Inform 2025 (Mar 12); 13:e64705

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Data Interoperability in COVID-19 Vaccine Trials: Methodological Approach in the VACCELERATE Project

Salma Malik, Zoi Pana Dorothea, Christos D Argyropoulos, Sophia Themistocleous, Alan J Macken, Olena Valdenmaiier, Frank Scheckenbach, Elena Bardach, Andrea Pfeiffer, Katherine Loens, Jordi Cano Ochando, Oliver A Cornely, Jacques Demotes-Mainard, Sergio Contrino, Gerd Felder

JMIR Med Inform 2025 (Mar 07); 13:e65590

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A Validation Tool (VaPCE) for Postcoordinated SNOMED CT Expressions: Development and Usability Study

Tessa Ohlsen, Viola Hofer, Josef Ingenerf

JMIR Med Inform 2025 (Feb 28); 13:e67984

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Effectiveness of the Facility for Elderly Surveillance System (FESSy) in Two Public Health Center Jurisdictions in Japan: Prospective Observational Study

Junko Kurita, Motomi Hori, Sumiyo Yamaguchi, Aiko Ogiwara, Yurina Saito, Minako Sugiyama, Asami Sunadori, Tomoko Hayashi, Akane Hara, Yukari Kawana, Youichi Itoi, Tamie Sugawara, Yoshiyuki Sugishita, Fujiko Irie, Naomi Sakurai

JMIR Med Inform 2025 (Jan 10); 13:e58509

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2024

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Visualizing Patient Pathways and Identifying Data Repositories in a UK Neurosciences Center: Exploratory Study

Jo Knight, Vishnu Vardhan Chandrabalan, Hedley C A Emsley

JMIR Med Inform 2024 (Dec 24); 12:e60017

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