Frequently asked questions

Below, read the most frequently asked questions about the PFF Community Registry.

Top questions

Who manages the PFF Registry?
What kind of data is collected?
What is the purpose of the PFF Community Registry?
Why do I have to consent to be in the PFF Community Registry?
What can I expect as a participant?
What is REDCap Cloud? What is myREDCap Cloud?
Do I have to pay to be in the PFF Community Registry?
Will I be compensated for my participation?
Can I participate if I do not have access to a computer, mobile device, or the internet?
I have been affected by PF as a family member, caregiver, and patient. Which group should I join when I first enroll into the PFF Community Registry?

About your participation

What can I expect as a participant?
What information is collected by the PFF Community Registry?
How long does it take to complete a set of surveys?
Will I be offered additional medical services?
When does my participation in the PFF Community Registry end?
How will I know when it is time to complete my next survey?
I struggle with computers and technology. Is it okay if someone helps me respond to surveys?
Will I get results from my surveys back?
I’m trying to answer a survey question, but I don’t see an answer option that perfectly describes my situation. What do I do?
I no longer wish to be a part of the PFF Community Registry. How do I end my participation?
What if my contact information has changed?

About optional research and educational events

When will I receive information about participating in additional research?
How do I learn more about these additional research projects?
What types of educational events will I receive information about?

Technical issues

I’ve tried to create a myREDCap Cloud account but have not received any emails. What should I do?
I am having trouble logging into the PFF Community Registry. What should I do?
Can I complete surveys using my smartphone or tablet?
How do I know which survey forms still need to be completed?
I made a mistake in answering a question and cannot go back to fix it. Can I change my answer?
The webpage will not load or show correctly. What should I do?
What if I have additional questions or concerns?

Your data and privacy

What is my information used for?
Will my information be shared with others?
What is your privacy policy?

Leaving the PFF Community Registry

What if I no longer want to participate in the PFF Community Registry?
Can someone else end my participation?