Research Infrastructures and Registries

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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Prototypical Clinical Trial Registry Based on Fast Healthcare Interoperability Resources (FHIR): Design and Implementation Study

Christian Gulden, Romina Blasini, Azadeh Nassirian, Alexandra Stein, Fatma Betül Altun, Melanie Kirchner, Hans-Ulrich Prokosch, Martin Boeker

JMIR Med Inform 2021 (Jan 12); 9(1):e20470

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Time to Treatment and In-Hospital Major Adverse Cardiac Events Among Patients With ST-Segment Elevation Myocardial Infarction Who Underwent Primary Percutaneous Coronary Intervention (PCI) According to the 24/7 Primary PCI Service Registry in Iran: Cross-Sectional Study

Younes Nozari, Babak Geraiely, Kian Alipasandi, Seyedeh Hamideh Mortazavi, Negar Omidi, Hassan Aghajani, Alireza Amirzadegan, Hamidreza Pourhoseini, Mojtaba Salarifar, Mohammad Alidoosti, Ali-Mohammad Haji-Zeinali, Ebrahim Nematipour, Mahin Nomali

Interact J Med Res 2020 (Dec 16); 9(4):e20352

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The Swiss Prison Study (SWIPS): Protocol for Establishing a Public Health Registry of Prisoners in Switzerland

Thomas Gaisl, Naser Musli, Patrick Baumgartner, Marc Meier, Silvana K Rampini, Eva Blozik, Edouard Battegay, Malcolm Kohler, Shekhar Saxena

JMIR Res Protoc 2020 (Dec 08); 9(12):e23973

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Leveraging a Cloud-Based Critical Care Registry for COVID-19 Pandemic Surveillance and Research in Low- and Middle-Income Countries

CRIT Care Asia, Madiha Hashmi, Abi Beane, Srinivas Murthy, Arjen M Dondorp, Rashan Haniffa

JMIR Public Health Surveill 2020 (Nov 23); 6(4):e21939

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A Systematic Framework for Analyzing Observation Data in Patient-Centered Registries: Case Study for Patients With Depression

Maryam Zolnoori, Mark D Williams, William B Leasure, Kurt B Angstman, Che Ngufor

JMIR Res Protoc 2020 (Oct 29); 9(10):e18366

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Enabling External Inquiries to an Existing Patient Registry by Using the Open Source Registry System for Rare Diseases: Demonstration of the System Using the European Society for Immunodeficiencies Registry

Raphael Scheible, Dennis Kadioglu, Stephan Ehl, Marco Blum, Martin Boeker, Michael Folz, Bodo Grimbacher, Jens Göbel, Christoph Klein, Alexandra Nieters, Stephan Rusch, Gerhard Kindle, Holger Storf

JMIR Med Inform 2020 (Oct 07); 8(10):e17420

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The Kaiser Permanente Northern California Adult Alcohol Registry, an Electronic Health Records-Based Registry of Patients With Alcohol Problems: Development and Implementation

Vanessa A Palzes, Constance Weisner, Felicia W Chi, Andrea H Kline-Simon, Derek D Satre, Matthew E Hirschtritt, Murtuza Ghadiali, Stacy Sterling

JMIR Med Inform 2020 (Jul 22); 8(7):e19081

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A Registry for Evaluation of Efficiency and Safety of Surgical Treatment of Cartilage Defects: The German Cartilage Registry (KnorpelRegister DGOU)

Julia Maurer, Birgit Grotejohann, Carolin Jenkner, Carla Schneider, Thomas Flury, Adrian Tassoni, Peter Angele, Jürgen Fritz, Dirk Albrecht, Philipp Niemeyer

JMIR Res Protoc 2016 (Jun 29); 5(2):e122

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Medical Registry Data Collection Efficiency: A Crossover Study Comparing Web-Based Electronic Data Capture and a Standard Spreadsheet

Pedro Vinícius Staziaki, Phillip Kim, Harshna V. Vadvala, Brian B. Ghoshhajra

J Med Internet Res 2016 (Jun 08); 18(6):e141

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A Web-Based Interactive Diabetes Registry for Health Care Management and Planning in Saudi Arabia

Khalid A Al-Rubeaan, Amira M Youssef, Shazia N Subhani, Najlaa A Ahmad, Ahmad H Al-Sharqawi, Heba M Ibrahim

J Med Internet Res 2013 (Sep 11); 15(9):e202

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