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. You will be asked to fill out surveys about yourself (if you have the mutation(s)), and any affected children.
In addition, we ask for information about each child’s mother and father (if known, just in case the parents are not affected). If you have already answered this information on other forms, you can skip it. For example, you don’t have to answer information about parents for each child if all affected kids have the same parents. 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 (it is Gould Syndrome Foundation)
Some notes on privacy:
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!