Decide How to Collect & Store Your Data
Overview
Create a private and secure form that invites participants to join your registry. Your registry goals will determine the data collection options and features you choose. After you create an online form, you will want to test it with colleagues and participants to ensure the form is focused and the questions are clear.
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)