REDCap uses data collection instruments called ‘forms’ as containers to structure data; each item on a form is a field. Think of a form as a data collection tool used to capture data elements. Typically, researchers divide forms by some domain, such as Demographics and Labs, or by work tasks like Clinic Intake and Contact Follow-Up.
In our sample registry, we create three forms: Demographics, Labs, and Study Management, each form has user-defined fields related to data for that form. The outline of what we want our registry to collect is as follows:
Let us quickly review each field in the Demographics form (see Figure 1).
Figure 1: Demographics Form
Remember REDCap automatically assigns a unique record identifier when you create a new record. The Record ID belongs to the participant, so all forms for a participant will have the same Record ID. The figure 2 below shows this relation:
Figure 2: All forms for a participant have the same Record ID
The ‘Study Management’ form (Figure 3) is used for registry management. Consider it a working form for coordinators or registry managers to track statuses for the participants in the registry. In this form, we have four fields.
Figure 3: Study Management Form
REDCap supports of variety of data validation and quality assurance features (see Data Collection Tool Design for guidance on using such features).
Let us review each item in figure 4, the Labs form:
Figure 4: Lab Form
REDCap allows the user to define Field Notes for fields which is small reminder text displayed underneath the field. In this example, we add a field note if the desired unit ‘mg/dL’ to the Blood Glucose field and the ‘%’ unit to the Hemoglobin A1C field. This helps supports consistent data entry.
At this point, you may be asking, “What should I do if I have to collect multiple labs over time?” Repeating Forms is a feature that allows individual ‘instances’ of the same form. Labs commonly have multiple values, and using repeating forms is an easy, organized way to collect those values. Figure 5 shows we have seven instances of Labs for the Record.
If you need to collect data in a repeated manner, you can enumerate fields on a form (e.g., Contact_Date_1, Contact Date_2, and Contact_Date_3) or repeating forms (see Figure 5).
Repeating fields work best if you know exactly how many iterations of a field you will have and that it will not change. Otherwise, it is best to use Repeating Forms.
Figure 5: REDCap Repeating Instruments
REDCap offers a few features to allow your team to record and track the status of forms.
The “Form Status Complete?” field exists on every form. It acts as a status indicator for the form and has the following three options:
Note: Form Status Complete? is an optional form element and is not required for data entry or collection. It is best practice to utilize as it aides with reporting and record keeping.
Figure 6: Form Status
The “Lock this record for this form?” checkbox enables a technical constraint in REDCap that protects the form from being modified or deleted. Additionally, REDCap creates audit log entries for locking and unlocking of the forms. Reports may be generated to identify unauthorized modifications or deletions.
Figure 7: Record Lock
Each form has a “Delete Data for THIS FORM only” button, which does just that. It, irreversibly, deletes the current form.
Figure 8: Delete Record
REDCap views records as shown in Record ID 3 and 9 (see Figure 9). Each of these records is distinct, with its own forms that store data. The Data Collection Instrument column displays the name of the form, while the “Status” column displays icons, with a green circle indicating a completed form, a red circle an incomplete form, and a stacked circles icon for repeating forms.
Figure 9: Records in REDCap
In addition to forms, there are several functions of REDCap to help you get your research registry off to a great start. For each function we will show how the function could be used to support our sample registry.
One of the more common functions REDCap offers is the generation of surveys. Surveys are versions of forms that permit data collection via email, web links, or even paper. Any form could become a survey, although some forms make more sense than others do, for example, a survey could be used to collect demographics for participants, whereas a study management survey is less practical.
Let’s look at an example.
For our registry, we want to add a form that records diabetes management methods. A simple question set will be used to determine which methods a participant uses. The first step is to create the data collection instrument (i.e., the form), as seen in Figure 10.
Figure 10: Diabetes Management Methods Form
Then we can convert it to a Survey using REDCap (Watch REDCap Survey Video) as see in Figure 11. Surveys can be accessed using a web link and included in email, or a registry web site for data collection. They can even be printed out and abstracted into REDCap later.
Figure 11: Diabetes Management Survey
You will notice that this survey looks different than the form, because the survey uses ‘branching logic’, which displays questions based off the answers to previous questions. In this example, we want to ask about Diet, Exercise, and Medication methods only if they say they use those methods to manage their diabetes. Therefore, once those options are selected, other options appear, as illustrated in Figure 11.
Figure 12. Diabetes Management Survey, expanded
Piping allows you to use the value of any form in that record in a field or value of another form. In Figure 13, you will see that the survey addresses ‘Sophia SMITH’ in the survey instructions. This is an example of using a REDCap feature called ‘piping’. In this example, we piped [first_name] [last_name] into the survey instructions. This pulls the values of first_name and last_name from the Demographics form and inserts them where desired.
Figure 13: Piping in REDCap
REDCap supports integration with electronic health records and other data repositories using Dynamic Data Pull and custom APIs. All integration should be completed in collaboration with the REDCap team.
If you plan to integrate your REDCap Registry and an EHR then its best to use the same coding and options as your EHR. For example, most EHRs capture gender as a multiple-choice field so you would want to capture gender as a multiple choice item in your form.
Communication is a key component to any successful registry whether between the registry team and the participants or internal communication among the registry team.
REDCap includes tools to communicate securely and safely with participants, members of the research team, and other collaborators. Using ‘Send-It’, you can upload and send files, including existing project documents, that are too large for email attachments or that contain sensitive data to multiple recipients.
REDCap Messenger is a chat-based tool integrated right into the project web interface that allows quick communication in a secure environment.
All REDCap surveys and data collection instruments can be downloaded as PDFs and printed for manual offline data collection. Additionally, REDCap offers a mobile application accessible via a smartphone or tablet that permits offline data collection for scenarios where reliable internet service is not available. The mobile app securely stores the information on the mobile device; once internet service is available, the information can be uploaded to the research project.
REDCap makes reporting and analyzing records easy with built in tools. For example, we can quickly plot out all Blood Glucose levels for all participants.
This allows for quick identification of target subjects, outliers, or potential erroneous data. Additionally, ad hoc reporting allows REDCap users to create a host of reports based off any elements in the registry. This permits for easier participant tracking, workflow processes, and error identification.
Okay, you have collected quality data and ready to do something else with it. How do you get all that data out? REDCap make it easy with built in tools and formats allows exporting data for analysis a cinch. REDCap allows you can format and de-identify data for analysis in other systems. Storage of all personally identifiable data and protected health information should follow your IRB and institutional protocol.
While this section highlights several functions of REDCap that can be used to support research registries, this guide is not comprehensive and there are many other features that may be beneficial for your registry, such as:
Questions? Contact us at nctracs@unc.edu or 919-966-6022.
© 2019-2022. The NC TraCS Institute is the integrated hub of the NIH Clinical and Translational Science Awards (CTSA) Program at the University of North Carolina at Chapel Hill. The Registry Toolkit website is supported by the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health, through Grant Award Number UL1TR002489. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. | accessibility