Back

Implementing a data infrastructure for precision oncology projects leveraging REDCap

Vesteghem, C.; Dahl, S. C.; Broendum, R. F.; Soenderkaer, M.; Boedker, J. S.; Schmitz, A.; Weischenfeldt, J.; Pedersen, I. S.; Sommer, M.; Rytter, A. S.; Nielsen, M. M.; Ladekarl, M.; Severinsen, M. T.; Dybkaer, K.; Groenbaek, K.; El-Galaly, T.; Roug, A. S.; Boegsted, M.

2022-05-12 health informatics
10.1101/2022.05.09.22274599 medRxiv
Show abstract

ObjectivesTo facilitate clinical implementation and research in precision oncology, notably the pairing of patients, variants and treatments to identify candidates for clinical trials, we have built a data infrastructure to 1) capture and store data, 2) reduce manual tasks for clinical and genomic data collection and management, 3) combine data for quality controls, reporting and findability. InfrastructureThe infrastructure uses REDCap repositories to capture and store data. The structure of these repositories is customized for each project. Additionally, a cross-project web platform was developed using software development best practices and state-of-the-art web technologies to circumvent REDCaps limitations and integrate other third-party resources. Using REDCaps application programming interfaces, this platform allowed validation of data across multiple repositories, easy import of data from external sources, generation of overviews of included patients and available data, combination of genomic and clinical data to generate tumour board reports and the findability of data. Its design was driven by data stewardship best practices. UsageAcross four precision medicine projects, the infrastructure has been used to collect data for 1921 patients, including 453 genomic data files. The custom-built web platform made it possible to import, validate, and present data in a comprehensive manner. This included building tumour board reports for clinicians, combining clinical and genomic data, and search functionalities for researchers. DiscussionREDCap allowed us to capitalize on the numerous data capture and management features developed in this solution. Designing a cross-project platform guarantees long-term relevance where developments can be mutualised across projects and allowed us to make the overall solution more compliant with the FAIR (Findable, Accessible, Interoperable, Reusable) data principles. Further developments should be considered, notably automatic retrieval of data from electronic health records to limit the number of manual tasks. ConclusionThe proposed infrastructure allowed our precision oncology projects to gain efficiency in data collection and increase data quality by reducing manual work, and it gave a straightforward and customized access to data for researchers and clinicians.

Matching journals

The top 6 journals account for 50% of the predicted probability mass.

1
JCO Clinical Cancer Informatics
18 papers in training set
Top 0.1%
26.5%
2
BMC Medical Informatics and Decision Making
39 papers in training set
Top 0.4%
7.0%
3
Cancer Medicine
24 papers in training set
Top 0.1%
6.5%
4
BMJ Health & Care Informatics
13 papers in training set
Top 0.1%
4.1%
5
JMIR Medical Informatics
17 papers in training set
Top 0.3%
3.7%
6
International Journal of Medical Informatics
25 papers in training set
Top 0.4%
3.3%
50% of probability mass above
7
Informatics in Medicine Unlocked
21 papers in training set
Top 0.2%
3.1%
8
Journal of Medical Internet Research
85 papers in training set
Top 2%
2.9%
9
Scientific Reports
3102 papers in training set
Top 45%
2.7%
10
PLOS ONE
4510 papers in training set
Top 47%
2.1%
11
BMJ Open
554 papers in training set
Top 8%
2.1%
12
Frontiers in Digital Health
20 papers in training set
Top 0.5%
1.9%
13
Bioinformatics
1061 papers in training set
Top 7%
1.7%
14
PLOS Computational Biology
1633 papers in training set
Top 16%
1.7%
15
Computers in Biology and Medicine
120 papers in training set
Top 3%
1.4%
16
JAMIA Open
37 papers in training set
Top 1.0%
1.4%
17
BMC Bioinformatics
383 papers in training set
Top 5%
1.3%
18
BMC Medical Research Methodology
43 papers in training set
Top 0.8%
1.3%
19
npj Digital Medicine
97 papers in training set
Top 3%
1.3%
20
Artificial Intelligence in Medicine
15 papers in training set
Top 0.5%
1.1%
21
Computer Methods and Programs in Biomedicine
27 papers in training set
Top 0.7%
0.9%
22
Journal of the American Medical Informatics Association
61 papers in training set
Top 2%
0.9%
23
BMC Infectious Diseases
118 papers in training set
Top 4%
0.9%
24
Biology Methods and Protocols
53 papers in training set
Top 2%
0.8%
25
European Journal of Cancer
10 papers in training set
Top 0.4%
0.8%
26
Database
51 papers in training set
Top 0.8%
0.8%
27
Journal of Personalized Medicine
28 papers in training set
Top 1%
0.8%
28
Clinical and Translational Science
21 papers in training set
Top 1%
0.7%
29
Nature Communications
4913 papers in training set
Top 65%
0.7%
30
Frontiers in Medicine
113 papers in training set
Top 8%
0.7%