Decide How to Collect & Store Your Data
Test Your Data Collection Tool
After you’ve created the data collection form, consider asking a variety of people to fill it out and give feedback on their experience. This step will help you discover any problems or changes you need to make to your registry before it is widely distributed.
- Find participants to pre-test the form who represent a range of experiences/backgrounds.
- Provide instructions and a due date to complete the form.
- If your intent is for the form to be accessible from a mobile device, ask the testers to try to access it from both their mobile device and their computer.
- Follow up with testers and have them respond to a series of predetermined questions, such as:
- What is your impression of the form?
- Was the form easy to use?
- How long did it take you to complete the form?
- Did you have difficulty answering any of the questions?
- Are any of the questions confusing?
- Were there any questions you were expecting to see but did not?
- Collect the responses to your pre-launch test and adjust the form as needed.
Resources
Pick a Data Collection Tool
Chapter 11: Obtaining Dara and Quality Assurance in Registries for Evaluating Patient Outcomes: A User’s Guide, [internet]. 4th Edition
Agency for Healthcare Research Quality (AHRQ) (link)
Section II: Legal and Ethical Considerations for Registries in Registries for Evaluating Patient Outcomes: A User’s Guide, [internet]. 4th Edition
Agency for Healthcare Research Quality (AHRQ) (link)
Google Sample Free Online Form Builder
Google Forms (link)
Survey Monkey Sample Free Online Form Builder
Survey Monkey (link)
CoRDS Sample Registry Platform
Coordination of Rare Diseases at Sanford (CoRDS) (link)
PIN Sample Registry Platform
Invitae Patient Insights Network (link)
IAMRARE Sample Registry Platform
National Organization for Rare Disorders (NORD): IAMRARE Registry Program (link)
REDCap Sample Registry Platform
Research Electronic Data Capture (REDCap) powered by Vanderbilt (link)
Know Features of the Data Collection Tool
Create Your Data Collection Tool
Google Sample Free Online Form Builder
Google Forms (link)
Survey Monkey Sample Free Online Form Builder
Survey Monkey (link)