Participant Frequently Asked Questions
Is my personal information safe?
Yes. All personal information is stored in a secure, password-protected, encrypted database that is backed up daily.
Who can access my information?
The Cerebral Palsy Research Registry coordinator is allowed access to all files. If you are associated with a participating institution of the CPRR, your institution will have an assigned administrator who can access your record. You will need an email address to view your personal record. If you enroll online, you will create your own, unique password. If you register on paper, contact the CPRR coordinator for a temporary password to view your record. You can change your personal password at anytime.
Do I have to participate in research studies?
No. You will be notified of research studies that you qualify for but it is up to you to contact the researcher to enroll or get more information unless you give additional permission for researchers to directly contact you.
How often will I be notified of research studies?
This depends on the number of studies being conducted that match your profile.
What kinds of research studies are there?
Research studies vary and can range from answering a questionnaire to performing activities with robotic devices. Sometimes studies compensate you for your time.