Migrating a Well-Established Longitudinal Cohort Database From Oracle SQL to Research Electronic Data Entry (REDCap): Data Management Research and Design Study

被引:1
作者
Kusejko, Katharina [1 ,2 ]
Smith, Daniel [1 ]
Scherrer, Alexandra [2 ]
Paioni, Paolo [3 ]
Vasconcelos, Malte Kohns [4 ]
Aebi-Popp, Karoline [5 ,6 ]
Kouyos, Roger D. [1 ,2 ]
Gunthard, Huldrych F. [1 ,2 ]
Kahlert, Christian R. [7 ,8 ]
机构
[1] Univ Zurich, Inst Med Virol, Zurich, Switzerland
[2] Univ Hosp Zurich, Div Infect Dis & Hosp Epidemiol, Zurich, Switzerland
[3] Univ Childrens Hosp Zurich, Div Infect Dis & Hosp Epidemiol, Zurich, Switzerland
[4] Univ Basel Childrens Hosp, Dept Infect Dis & Vaccinol, Basel, Switzerland
[5] Univ Bern, Inselspital Bern, Dept Infect Dis, Bern, Switzerland
[6] Lindenhofspital, Dept Obstet & Gynecol, Bern, Switzerland
[7] Cantonal Hosp St Gallen, Div Infect Dis & Hosp Epidemiol, St Gallen, Switzerland
[8] Childrens Hosp Eastern Switzerland, Div Infect Dis & Hosp Epidemiol, St Gallen, Switzerland
基金
瑞士国家科学基金会;
关键词
REDCap; cohort study; data collection; electronic case report forms; eCRF; software; digital solution; electronic data entry; HIV; WORKFLOW;
D O I
10.2196/44567
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
Background: Providing user-friendly electronic data collection tools for large multicenter studies is key for obtaining high-quality research data. Research Electronic Data Capture (REDCap) is a software solution developed for setting up research databases with integrated graphical user interfaces for electronic data entry. The Swiss Mother and Child HIV Cohort Study (MoCHiV) is a longitudinal cohort study with around 2 million data entries dating back to the early 1980s. Until 2022, data collection in MoCHiV was paper-based. Objective: The objective of this study was to provide a user-friendly graphical interface for electronic data entry for physicians and study nurses reporting MoCHiV data. Methods: MoCHiV collects information on obstetric events among women living with HIV and children born to mothers living with HIV. Until 2022, MoCHiV data were stored in an Oracle SQL relational database. In this project, R and REDCap were used to develop an electronic data entry platform for MoCHiV with migration of already collected data. Results: The key steps for providing an electronic data entry option for MoCHiV were (1) design, (2) data cleaning and formatting, (3) migration and compliance, and (4) add-on features. In the first step, the database structure was defined in REDCap, including the specification of primary and foreign keys, definition of study variables, and the hierarchy of questions (termed "branching logic"). In the second step, data stored in Oracle were cleaned and formatted to adhere to the defined database structure. Systematic data checks ensured compliance to all branching logic and levels of categorical variables. REDCap-specific variables and numbering of repeated events for enabling a relational data structure in REDCap were generated using R. In the third step, data were imported to REDCap and then systematically compared to the original data. In the last step, add-on features, such as data access groups, redirections, and summary reports, were integrated to facilitate data entry in the multicenter MoCHiV study. Conclusions: By combining different software tools-Oracle SQL, R, and REDCap-and building a systematic pipeline for data cleaning, formatting, and comparing, we were able to migrate a multicenter longitudinal cohort study from Oracle SQL to REDCap. REDCap offers a flexible way for developing customized study designs, even in the case of longitudinal studies with different study arms (ie, obstetric events, women, and mother-child pairs). However, REDCap does not offer built-in tools for preprocessing large data sets before data import. Additional software is needed (eg, R) for data formatting and cleaning to achieve the predefined REDCap data structure.
引用
收藏
页数:9
相关论文
共 28 条
  • [1] Aebi-Popp Karoline, 2014, J Int AIDS Soc, V17, P19535, DOI 10.7448/IAS.17.4.19535
  • [2] [Anonymous], 2018, NATURE, V555, P286, DOI 10.1038/d41586-018-03065-z
  • [3] Brix Tobias J, 2022, Stud Health Technol Inform, V294, P184, DOI 10.3233/SHTI220434
  • [4] Don't forget people and specimens that make the database
    Campbell, David
    [J]. NATURE, 2008, 455 (7213) : 590 - 590
  • [5] REDCap on FHIR: Clinical Data Interoperability Services
    Cheng, A. C.
    Duda, S. N.
    Taylor, R.
    Delacqua, F.
    Lewis, A. A.
    Bosler, T.
    Johnson, K. B.
    Harris, P. A.
    [J]. JOURNAL OF BIOMEDICAL INFORMATICS, 2021, 121
  • [6] A New Initiative on Precision Medicine
    Collins, Francis S.
    Varmus, Harold
    [J]. NEW ENGLAND JOURNAL OF MEDICINE, 2015, 372 (09) : 793 - 795
  • [7] The rate of mother-to-child transmission of antiretroviral drug-resistant HIV strains is low in the Swiss Mother and Child HIV Cohort Study
    Compagno, Francesca
    Naegele, Klaudia
    Kahlert, Christian R.
    Hosli, Irene
    Aebi-Popp, Karoline
    de Tejada, Martinez Begona
    Paioni, Paolo
    Yerly, Sabine
    Boni, Jurg
    Battegay, Manuel
    Rudin, Christoph
    Hirsch, Hans H.
    Anagnostopoulos, A.
    Asner, S.
    Baumann, M.
    Furrer, H.
    Fux, C. A.
    Grawe, C.
    Gunthard, H. F.
    Haerry, D.
    Hasse, B.
    Hoffmann, M.
    Huber, M.
    Kaiser, L.
    Keiser, O.
    Klimkait, T.
    Kottanattu, L.
    Kouyos, R. D.
    Kovari, H.
    Ledergerber, B.
    Martinetti, G.
    Marzolini, C.
    Metzner, K. J.
    Mueller, N.
    Nicca, D.
    Pantaleo, G.
    Perreau, M.
    Polli, Ch
    Rauch, A.
    Scherrer, A. U.
    Schmid, P.
    Speck, R.
    Stockle, M.
    Tarr, P.
    Thanh, Lecompte M.
    Vernazza, P.
    Wagner, N.
    Wandeler, G.
    Weber, R.
    Wyler, C. A.
    [J]. SWISS MEDICAL WEEKLY, 2019, 149
  • [8] Problems, challenges and promises: perspectives on precision medicine
    Duffy, David J.
    [J]. BRIEFINGS IN BIOINFORMATICS, 2016, 17 (03) : 494 - 504
  • [9] REDLetr: Workflow and tools to support the migration of legacy clinical data capture systems to REDCap
    Dunn, William D., Jr.
    Cobb, Jake
    Levey, Allan I.
    Gutman, David A.
    [J]. INTERNATIONAL JOURNAL OF MEDICAL INFORMATICS, 2016, 93 : 103 - 110
  • [10] Ethic committee approval and informed consent, SWISS HIV COH STUD