Research Infrastructures and Registries

Domain-Specific Common Data Elements for Rare Disease Registration: Conceptual Approach of a European Joint Initiative Toward Semantic Interoperability in Rare Disease Research

Haitham Abaza, Dennis Kadioglu, Simona Martin, Andri Papadopoulou, Bruna dos Santos Vieira, Franz Schaefer, Holger Storf

JMIR Med Inform 2022 (May 20); 10(5):e32158

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Mechanism of Impact of Big Data Resources on Medical Collaborative Networks From the Perspective of Transaction Efficiency of Medical Services: Survey Study

Junyi Yuan, Sufen Wang, Changqing Pan

J Med Internet Res 2022 (Apr 21); 24(4):e32776

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Barriers to Clinical Trial Participation: Comparative Study Between Rural and Urban Participants

Dinesh Pal Mudaranthakam, Byron Gajewski, Hope Krebill, James Coulter, Michelle Springer, Elizabeth Calhoun, Dorothy Hughes, Matthew Mayo, Gary Doolittle

JMIR Cancer 2022 (Apr 21); 8(2):e33240

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Patient Recruitment System for Clinical Trials: Mixed Methods Study About Requirements at Ten University Hospitals

Kai Fitzer, Renate Haeuslschmid, Romina Blasini, Fatma Betül Altun, Christopher Hampf, Sherry Freiesleben, Philipp Macho, Hans-Ulrich Prokosch, Christian Gulden

JMIR Med Inform 2022 (Apr 20); 10(4):e28696

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Mining Electronic Health Records for Drugs Associated With 28-day Mortality in COVID-19: Pharmacopoeia-wide Association Study (PharmWAS)

Ivan Lerner, Arnaud Serret-Larmande, Bastien Rance, Nicolas Garcelon, Anita Burgun, Laurent Chouchana, Antoine Neuraz

JMIR Med Inform 2022 (Mar 30); 10(3):e35190

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Lessons From a Rapid Project Management Exercise in the Time of Pandemic: Methodology for a Global COVID-19 VIRUS Registry Database

Janice R Turek, Vikas Bansal, Aysun Tekin, Shuchita Singh, Neha Deo, Mayank Sharma, Marija Bogojevic, Shahraz Qamar, Romil Singh, Vishakha Kumar, Rahul Kashyap

JMIR Res Protoc 2022 (Mar 15); 11(3):e27921

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A National Network of Safe Havens: Scottish Perspective

Chuang Gao, Mark McGilchrist, Shahzad Mumtaz, Christopher Hall, Lesley Ann Anderson, John Zurowski, Sharon Gordon, Joanne Lumsden, Vicky Munro, Artur Wozniak, Michael Sibley, Christopher Banks, Chris Duncan, Pamela Linksted, Alastair Hume, Catherine L Stables, Charlie Mayor, Jacqueline Caldwell, Katie Wilde, Christian Cole, Emily Jefferson

J Med Internet Res 2022 (Mar 09); 24(3):e31684

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Cocreating a Harmonized Living Lab for Big Data–Driven Hybrid Persona Development: Protocol for Cocreating, Testing, and Seeking Consensus

Teemu Santonen, Despoina Petsani, Mikko Julin, Markus Garschall, Johannes Kropf, Vicky Van der Auwera, Sylvie Bernaerts, Raquel Losada, Rosa Almeida, Jokin Garatea, Idoia Muñoz, Eniko Nagy, Eva Kehayia, Elaine de Guise, Sylvie Nadeau, Nancy Azevedo, Sofia Segkouli, Ioulietta Lazarou, Vasileia Petronikolou, Panagiotis Bamidis, Evdokimos Konstantinidis

JMIR Res Protoc 2022 (Jan 06); 11(1):e34567

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An Integrated, Scalable, Electronic Video Consent Process to Power Precision Health Research: Large, Population-Based, Cohort Implementation and Scalability Study

Clara Lajonchere, Arash Naeim, Sarah Dry, Neil Wenger, David Elashoff, Sitaram Vangala, Antonia Petruse, Maryam Ariannejad, Clara Magyar, Liliana Johansen, Gabriela Werre, Maxwell Kroloff, Daniel Geschwind

J Med Internet Res 2021 (Dec 08); 23(12):e31121

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Recruitment of Patients With Amyotrophic Lateral Sclerosis for Clinical Trials and Epidemiological Studies: Descriptive Study of the National ALS Registry’s Research Notification Mechanism

Paul Mehta, Jaime Raymond, Moon Kwon Han, Theodore Larson, James D Berry, Sabrina Paganoni, Hiroshi Mitsumoto, Richard Stanley Bedlack, D Kevin Horton

J Med Internet Res 2021 (Dec 07); 23(12):e28021

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Open-source Software Sustainability Models: Initial White Paper From the Informatics Technology for Cancer Research Sustainability and Industry Partnership Working Group

Ye Ye, Seemran Barapatre, Michael K Davis, Keith O Elliston, Christos Davatzikos, Andrey Fedorov, Jean-Christophe Fillion-Robin, Ian Foster, John R Gilbertson, Andras Lasso, James V Miller, Martin Morgan, Steve Pieper, Brigitte E Raumann, Brion D Sarachan, Guergana Savova, Jonathan C Silverstein, Donald P Taylor, Joyce B Zelnis, Guo-Qiang Zhang, Jamie Cuticchia, Michael J Becich

J Med Internet Res 2021 (Dec 02); 23(12):e20028

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ClinicalTrials.gov as a Source of Information About Expanded Access Programs: Cohort Study

Jan Borysowski, Andrzej Górski

J Med Internet Res 2021 (Oct 28); 23(10):e26890

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Design and Rationale of the National Tunisian Registry of Heart Failure (NATURE-HF): Protocol for a Multicenter Registry Study

Leila Abid, Ikram Kammoun, Manel Ben Halima, Salma Charfeddine, Hedi Ben Slima, Meriem Drissa, Khadija Mzoughi, Dorra Mbarek, Leila Riahi, Saoussen Antit, Afef Ben Halima, Wejdene Ouechtati, Emna Allouche, Mehdi Mechri, Chedi Yousfi, Ali Khorchani, Omar Abid, Kais Sammoud, Khaled Ezzaouia, Imen Gtif, Sana Ouali, Feten Triki, Sonia Hamdi, Selim Boudiche, Marwa Chebbi, Mouna Hentati, Amani Farah, Habib Triki, Houda Ghardallou, Haythem Raddaoui, Sofien Zayed, Fares Azaiez, Fadwa Omri, Akram Zouari, Zine Ben Ali, Aymen Najjar, Houssem Thabet, Mouna Chaker, Samar Mohamed, Marwa Chouaieb, Abdelhamid Ben Jemaa, Haythem Tangour, Yassmine Kammoun, Mahmoud Bouhlel, Seifeddine Azaiez, Rim Letaief, Salah Maskhi, Aymen Amri, Hela Naanaa, Raoudha Othmani, Iheb Chahbani, Houcine Zargouni, Syrine Abid, Mokdad Ayari, Ines ben Ameur, Ali Gasmi, Nejeh ben Halima, Habib Haouala, Essia Boughzela, Lilia Zakhama, Soraya ben Youssef, Wided Nasraoui, Mohamed Rachid Boujnah, Nadia Barakett, Sondes Kraiem, Habiba Drissa, Ali Ben Khalfallah, Habib Gamra, Salem Kachboura, Leila Bezdah, Hedi Baccar, Sami Milouchi, Wissem Sdiri, Skander Ben Omrane, Salem Abdesselem, Alifa Kanoun, Karima Hezbri, Faiez Zannad, Alexandre Mebazaa, Samir Kammoun, Mohamed Sami Mourali, Faouzi Addad

JMIR Res Protoc 2021 (Oct 27); 10(10):e12262

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The Transition to an Entirely Digital Immunization Registry in Ha Noi Province and Son La Province, Vietnam: Readiness Assessment Study

Hong Duong, Sang Dao, Huyen Dang, Linh Nguyen, Tuan Ngo, Trung Nguyen, Lan Anh Tran, Doan Nguyen, Maya Rivera, Nga Nguyen

JMIR Form Res 2021 (Oct 25); 5(10):e28096

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Verifying the Feasibility of Implementing Semantic Interoperability in Different Countries Based on the OpenEHR Approach: Comparative Study of Acute Coronary Syndrome Registries

Lingtong Min, Koray Atalag, Qi Tian, Yani Chen, Xudong Lu

JMIR Med Inform 2021 (Oct 19); 9(10):e31288

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An Electronic Registry for Improving the Quality of Antenatal Care in Rural Bangladesh (eRegMat): Protocol for a Cluster Randomized Controlled Trial

Anisur Rahman, Ingrid K Friberg, Akuba Dolphyne, Ingvild Fjeldheim, Fatema Khatun, Brian O'Donnell, Jesmin Pervin, Monjur Rahman, A M Qaiyum Rahman, U Tin Nu, Bidhan Krishna Sarker, Mahima Venkateswaran, J Frederik Frøen

JMIR Res Protoc 2021 (Jul 06); 10(7):e26918

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Preferences of the Public for Sharing Health Data: Discrete Choice Experiment

Jennifer Viberg Johansson, Heidi Beate Bentzen, Nisha Shah, Eik Haraldsdóttir, Guðbjörg Andrea Jónsdóttir, Jane Kaye, Deborah Mascalzoni, Jorien Veldwijk

JMIR Med Inform 2021 (Jul 05); 9(7):e29614

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Machine Learning for Risk Group Identification and User Data Collection in a Herpes Simplex Virus Patient Registry: Algorithm Development and Validation Study

Svitlana Surodina, Ching Lam, Svetislav Grbich, Madison Milne-Ives, Michelle van Velthoven, Edward Meinert

JMIRx Med 2021 (Jun 11); 2(2):e25560

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A Real-World Rheumatology Registry and Research Consortium: The German RheumaDatenRhePort (RHADAR) Registry

Stefan Kleinert, Peter Bartz-Bazzanella, Cay von der Decken, Johannes Knitza, Torsten Witte, Sándor P Fekete, Matthias Konitzny, Alexander Zink, Georg Gauler, Patrick Wurth, Peer Aries, Kirsten Karberg, Christoph Kuhn, Florian Schuch, Susanna Späthling-Mestekemper, Wolfgang Vorbrüggen, Matthias Englbrecht, Martin Welcker, RHADAR Group

J Med Internet Res 2021 (May 20); 23(5):e28164

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Electronic Health Records–Based Cardio-Oncology Registry for Care Gap Identification and Pragmatic Research: Procedure and Observational Study

Alvin Chandra, Steven T Philips, Ambarish Pandey, Mujeeb Basit, Vaishnavi Kannan, Evan J Sara, Sandeep R Das, Simon J C Lee, Barbara Haley, DuWayne L Willett, Vlad G Zaha

JMIR Cardio 2021 (May 12); 5(1):e22296

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