Decide How to Collect & Store Your Data
Know Features of the Data Collection Tool
When choosing a data collection method for your registry, consider the following factors:
- Cost
- Is cost a factor for you?
- Does the data collection method require a fee? Is it a one-time fee, or is it ongoing (e.g., monthly, yearly)?
- If there is a fee, what does the fee cover?
- Information technology (IT) knowledge
- What level of IT knowledge is required to create, edit, maintain, and review the form?
- Form building
- Is there a limit on the number of questions?
- Does it offer different question types (e.g., multiple choice, checkbox, dropdown, file upload)?
- Are you able to select questions from a library of questions?
- Can questions be customized?
- Can you create conditional questions that use answers provided to relevant previous questions?
- Can some fields be required?
- Does the service provide a validation function (e.g., an error message displays when an e-mail address does not use standard format,or a telephone number is missing a digit)?
- Is there a limit to the number of responses per form?
- Accessibility/Participant Experience
- Is it mobile-friendly?
- Does it provide help to participants?
- To help explain how to complete the form.
- To help understand the question.
- To let participants know if they have not completed a required field.
- Can you share it using a link? (through social media, email, or from a website)
- Are different languages available?
- Is the form easy to read and easy to complete?
- Can participants save their progress and complete the form later?
- Can participants update their own information once the form has been filled out and submitted?
- Data usability
- Is the data accessible, usable, and manageable?
- Does it provide/create charts/graphs depicting all collected data?
- Can data be collected and organized in real time? (e.g., via a dashboard, into a spreadsheet or other document)
- Can you set up notifications to let you know when a form is completed?
- Can data be exported into forms, sheets, or other programs/applications for sharing?
- Sustainability
- How stable is the tool/service? (for example, how long has the service been in existence or does the service have a long-term plan)
- Who owns the data?
Use the RaDaR Tool: Compare Features of Data Collection Methods to compare the various data collection options to find the one that best meets your registry’s goals.
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)