170
Participants
Start Date
June 16, 2017
Primary Completion Date
March 13, 2019
Study Completion Date
September 13, 2019
Web-based Survey
Patients will be sent an email invitation describing the study. If the participant wants to participate and is eligible, she will follow the survey link in the email message, which directs her to an IRB-approved online consent form. A unique survey link will be generated for each participant and included in the survey invitation, which is a customized email message. This link will allow the investigators to determine who completed the survey. The investigators will send repeat email invitations every two months (total of 3 invitations) to those invitees who have not yet participated. The investigators will allow approximately 6 months for enrollment and survey completion and expect that the study will close soon thereafter.
RDCRN Data Management and Coordinating Center, University of South Florida, Tampa
Rare Diseases Clinical Research Network
NETWORK
National Institutes of Health (NIH)
NIH
University of South Florida
OTHER