The CLOVES Syndrome Community contact registry will be used to inform individuals with CLOVES Syndrome and their guardians about:
- discoveries about CLOVES Syndrome that may impact care decisions
- opportunities to participate in research
- opportunities to contribute data
Details about the registry:
It’s easy to join - Participation is voluntary
There is no cost to you: the costs are supported by CLOVES Syndrome Community
Your information will be transmitted via a secure server and stored in a database.
You can choose to withdraw from the registry at any point.
How is information stored?
Once you have entered and submitted this information online, the data will be stored in a secure database.
No personal identifying information will be given to anyone without your expressed approval.
The information stored in the contact registry will not be shared with anyone outside of CLOVES Syndrome Community. Registrants will be provided with contact information about relevant research and survey efforts.
We may use aggregate data from the contact registry to publish statistics about the incidence of CLOVES Syndrome.
For example, we may use contact registry data to say how many people have CLOVES, what their age ranges are and how they are distributed geographically.
Who can join the registry?
Anyone with a diagnosis of CLOVES Syndrome can be part of the registry.
You must opt in to our contact registry by filling out the form on our website http://clovessyndrome.org/cloves-contact-registry
We will not use this list for marketing or fundraising. If our policy about acceptable use of our contact registry ever changes, you will be notified. You may opt-out of the contact registry at any time by emailing us at firstname.lastname@example.org