Decide How to Collect & Store Your Data
Create Your Data Collection Tool
After you’ve chosen the data collection method that best meets the goals of your registry, it’s time to create the fields that will enable you to gather the information you want from each participant.
Keep these things in mind as you develop the form:
- Include a title.
- Explain the purpose of the form.
- Provide an estimate of time needed to complete the form.
- Provide clear instructions.
- Ask only for information that’s needed.
- Select the appropriate question type (e.g., multiple-choice, drop down menu, checkbox).
- Use clear language.
- Consider the order of your questions. More important questions are typically found at the beginning of the form.
You may want to review the RaDaR Tool: Standard Contact & Demographic Questions as well as the sample Google Form and Survey Monkey created using this tool.
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)