We are excited to announce the launch of the Gould Syndrome (COL4A1/COL4A2) Global Registry. Please click: https://is.gd/COL4A12
The purpose of this registry is to document the experiences of Gould syndrome patients so that scientists can better understand the condition and develop effective treatments.
If you are a Clinician, please forward this link to your patients.
Please help us to improve the registry by giving us feedback on the design and questions. If you have any other suggestions, please send them to: firstname.lastname@example.org
An Institutional Review Board has reviewed our study protocol. In our protocol, we promise to never share your personal information collected in the survey with anyone. We are excited to analyze the data but we will never share personal information in our reports. If a researcher wants to conduct their own study, we will send you the information about the study and let you reach out to the researcher. We will never give the researcher your information directly. We may share de-identified (anonymous) data with researchers who want to perform their own analyses, but again, never your names or other HIPPA identifiers.
If you want to be contacted about other researchers, or to receive a follow-up survey, please check the appropriate box on the first page of the survey.
Thank you for your participation!