A critical component for any registry is a safe, secure, reliable method to store and interact with your data. In this section, we will explore REDCap and how it can be used for creating and managing your registry.
REDCap stands for Research Electronic Data Capture, also known generically as electronic data management software. There are many sources of REDCap information, including a large community-based consortium for support and ideas (see REDCap Resources below). Here, however, we will focus on using REDCap for registry creation and management. As a researcher building a registry, you will need a secure, effective place to store your data, and REDCap is a great option.
Creating and maintaining a registry requires thorough planning, attention to detail, and strong organization. Using REDCap allows a research team to design, standardize, and maintain quality measure for registries.
Let us review and contrast methods of electronically capturing and storing registry data, including spreadsheets and relational databases.
Spreadsheets are wonderful tools for managing finances, sales, or task lists. However, spreadsheets are neither designed nor optimized for storing research data, especially about human subjects. Although plenty of researchers have created simple or even complex registries using spreadsheets, there are many disadvantages to doing so.
Table 1: Spreadsheet data collection
Consider having two subjects, as shown in Table 1. They fit nicely into two rows of a spreadsheet, but say we want to add lab results for blood glucose, which is a temporal, repeating result as seen in Table 2:
Table 2: Spreadsheet data collection with lab values
The result is a wider data set. If we add the date and time of each result, it just gets wider. Additionally, because a subject could have hundreds of glucose results, storing all that data “horizontally” in a single spreadsheet becomes highly inefficient.
There are several disadvantages to using spreadsheets for data collection:
Several online spreadsheet applications are available. These applications breakdown one of the fundamental disadvantages of spreadsheets ‘collaboration’ as they allow more than one user to access and simultaneously edit the spreadsheet. However, these services are generally not HIPAA compliant and still are prone to data errors.
If a spreadsheet is not right for your project, you might determine that a better way to store such results is in a vertical fashion, as shown in Table 3. This is, in fact, an excellent approach to storing longitudinal participant data, and can be achieved with relational databases. There are a variety of types of relational databases including desktop databases, server databases, and cloud databases, each with a multitude of applications and tools available for their creation and management.
Table 3: “Vertical” data storage
You may ask, “Could I just build my own database?” Of course—but doing so comes with the responsibility for infrastructure, programming, maintenance, and security. Unlike a custom database solution, REDCap is a database that:
To summarize, consider the comparison chart in Table 4 below. Any of these methods could be used to create a registry, but REDCap offers many key features to start your registry out on the right path.
Table 4: Database Comparison
|Spreadsheet||$||Low||1||Desktop||Depends on User||Save often!|
|Storage Capacity||Own Database||Low||High||High|
|Own Database||$$$$||High||>1||Custom Built||Depends on Programming||Depends on Programming|
|Number of Users||REDCap||1||>1||>1|
|Security||Depends on User||Depends on Programming||High|
|Back-ups||Save Often!||Depends on Programming||Daily|
If you already have your registry in spreadsheets or another database, but would like to convert it into REDCap, contact NC TraCS for a consult.
When you use REDCap, all data are kept secure and private. REDCap can remove identifiers from a dataset prior to exporting for analysis to create either a limited data set or a safe harbor data set. A safe harbor data set is the removal of the 18 pieces of information considered identifiers for the purposes of HIPAA compliance. REDCap supports data security in the following ways:
Learn more about data privacy and security in registries here.