Research Infrastructures and Registries

Trusted Data Spaces as a Viable and Sustainable Solution for Networks of Population-Based Patient Registries

Nicholas Nicholson, Sandra Caldeira, Artur Furtado, Ciaran Nicholl

JMIR Public Health Surveill 2023 (Jan 13); 9:e34123

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A Privacy-Preserving Distributed Medical Data Integration Security System for Accuracy Assessment of Cancer Screening: Development Study of Novel Data Integration System

Atsuko Miyaji, Kaname Watanabe, Yuuki Takano, Kazuhisa Nakasho, Sho Nakamura, Yuntao Wang, Hiroto Narimatsu

JMIR Med Inform 2022 (Dec 30); 10(12):e38922

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Linking Biomedical Data Warehouse Records With the National Mortality Database in France: Large-scale Matching Algorithm

Vianney Guardiolle, Adrien Bazoge, Emmanuel Morin, Béatrice Daille, Delphine Toublant, Guillaume Bouzillé, Youenn Merel, Morgane Pierre-Jean, Alexandre Filiot, Marc Cuggia, Matthieu Wargny, Antoine Lamer, Pierre-Antoine Gourraud

JMIR Med Inform 2022 (Nov 01); 10(11):e36711

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Using Electronic Health Records for the Learning Health System: Creation of a Diabetes Research Registry

Brian J Wells, Stephen M Downs, Brian Ostasiewski

JMIR Med Inform 2022 (Sep 23); 10(9):e39746

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Design and Rationale of the National Observational Multicentric Tunisian Registry of Hypertension: Protocol for Evaluating Hypertensive Patient Care in Clinical Practice

Leila Abid, Rania Hammami, Salem Abdesselem, Selim Boudiche, Ben Slima Hédi, Khaled Sayahi, Amine Bahloul, Ikram Chamtouri, Salma Charfeddine, Lamia Rais, Meriem Drissa, Badreddine Ben Kaab, Hassen Ibn hadj amor, Lilia Ben Fatma, Riadh Garbaa, Sabrine Boukhris, Allouche Emna, Manel Ben Halima, Nesrine Amdouni, Shayma Ghorbel, Sabrine Soudani, Imen Khaled, Syrine Triki, Feten Bouazizi, Imen Jemai, Ouday Abdeljalil, Yemna Ammar, Amani Farah, Adnen Neji, Zeineb Oumaya, Sana Seghaier, Samir Mokrani, Hamza Thawaba, Hela Sarray, Khalil Ouaghlani, Houssem Thabet, Zeineb Mnif, Boujelben Masmoudi Fatma, Mohamed Sghaier, Roueida Khalifa, Sami Fourati, Yassmine Kammoun, Syrine Abid, Chiheb Hamza, Syrine Ben Jeddou, Lassaad Sabbah, Rim Lakhdhar, Najla Dammak, Tarak Sellami, Basma Herbegue, Alia Koubaa, Faten Triki, Tarek Ellouze, Aicha Hmoudi, Ikhlas Ben Ameur, Mohamed Mongi Boukhchina, Neila Abid, Wejdene Ouechtati, Nizar Nasrallah, Yousra Houidi, Fathia Mghaieth Zghal, Ghodhbane Elhem, Mounira Chayeb, Chenik Sarra, Samira Kaabachi, Nizar Saadaoui, Ines Ben Ameur, Moufida Affes, Sana Ouali, Mouna Chaker, Hela Naana, Dghim Meriem, Mourad Jarrar, Jihen Mnif, Ahmed Turki, Ihsen Zairi, Jamel Langar, Safa Dardouri, Imen Hachaichi, Rafik Chettaoui, Wajih Smat, Amel Chakroun, Khadija Mzoughi, Rachid Mechmeche, Afef Ben Halima, Sahar Ben Kahla Koubaa, Slim Chtourou, Maalej Mohamed abdelkader, Mohsen Ayari, Moufid Hadrich, Tlili Rami, Fares Azaiez, Imen Bouhlel, Samir Sahnoun, Habib Jerbi, Ben Mrad Imtinene, Leila Riahi, Mohamed Sahnoun, Abdelhamid Ben Jemaa, Amal Ben Salem, Bassem Rekik, Maroua Ben Doudou, Mohamed Rachid Boujnah, Anissa Joulak, Abid Omar, Rabie Razgallah, Milouchi Sami, Elyes Neffati, Habib Gamra, Soraya Ben Youssef, Wissem Sdiri, Nejeh Ben Halima, Youssef Ben Ameur, Salem Kachboura, Sondes Kraiem, Wafa Fehri, Lilia Zakhama, leila Bezdah, Mourali Mohamed Sami, Habiba Drissa, Mohamed Faouzi Maatouk, Samir Kammoun, Faouzi Addad

JMIR Res Protoc 2022 (Sep 02); 11(9):e21878

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The Variations in Care and Real-world Outcomes in Individuals With Rectal Cancer: Protocol for the Ontario Rectal Cancer Cohort

Sunil Patel, Chad McClintock, Christopher Booth, Shaila Merchant, Carl Heneghan, Clare Bankhead

JMIR Res Protoc 2022 (Aug 05); 11(8):e38874

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Design and Rationale of the National Tunisian Registry of Percutaneous Coronary Intervention: Protocol for a Prospective Multicenter Observational Study

Rania Hammami, Selim Boudiche, Tlili Rami, Nejeh Ben Halima, Ahmed Jamel, Bassem Rekik, Rym Gribaa, Ben Mrad Imtinene, Salma Charfeddine, Tarek Ellouze, Amine Bahloul, Ben Slima Hédi, Jamel Langar, Habib Ben Ahmed, Zied Ibn Elhadj, Mohamed Hmam, Mohamed Aymen Ben Abdessalem, Sabri Maaoui, Sana Fennira, Laroussi Lobna, Majed Hassine, Sami Ouanes, Drissi Mohamed Faouzi, Souad Mallek, Abdallah Mahdhaoui, Dghim Meriem, Walid Jomaa, Sofien Zayed, Tawfik Kateb, Nidhal Bouchahda, Fares Azaiez, Helmi Ben Salem, Morched Marouen, Aymen Noamen, Salem Abdesselem, Denguir Hichem, Hassen Ibn Hadj Amor, Farhati Abdeljelil, Amine Amara, Karim Bejar, Ben Hamda Khaldoun, Chiheb Hamza, Mohsen Ben Jamaa, Sami Fourati, Faycal Elleuch, Zeineb Grati, Slim Chtourou, Sami Marouene, Mohamed Sahnoun, Morched Hadrich, Maalej Mohamed Abdelkader, Hatem Bouraoui, Kamel Kamoun, Moufid Hadrich, Tarek Ben Chedli, Mohamed Akrem Drissa, Hanene Charfeddine, Nizar Saadaoui, Gargouri Achraf, Siala Ahmed, Mokdad Ayari, Marsit Nabil, Sabeur Mnif, Maher Sahnoun, Helmi Kammoun, Khaled Ben Jemaa, Gharbi Mostari, Nebil Hamrouni, Maazoun Yamen, Yassine Ellouz, Zahreddine Smiri, Amine Hdiji, Jerbi Bassem, Wacef Ayadi, Amir Zouari, Chedly Abbassi, Boujelben Masmoudi Fatma, Kais Battikh, Elyes Kharrat, Imen Gtif, Milouchi Sami, Leila Bezdah, Salem Kachboura, Mohamed Faouzi Maatouk, Sondes Kraiem, Gouider Jeridi, Elyes Neffati, Samir Kammoun, Youssef Ben Ameur, Wafa Fehri, Habib Gamra, Lilia Zakhama, Faouzi Addad, Mourali Mohamed Sami, Leila Abid

JMIR Res Protoc 2022 (Aug 05); 11(8):e24595

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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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