The Proteus Syndrome Syndrome Foundation Patient Registry will be used to inform individuals with Proteus Syndrome and their caregivers about:

• discoveries about Proteus Syndrome that may impact care decisions
• opportunities to participate in research
• opportunities to contribute data

Details about the registry:

• It’s easy to join!
• There is no cost to you: the costs are supported by Proteus Syndrome Foundation
• Your information will be transmitted via a secure server and stored in a database.
• Participation is voluntary
• 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 patient registry will not be shared with anyone outside of Proteus Syndrome Community.
• Registrants will be provided with patient information about relevant research and survey efforts.
• We may use aggregate data from the patient registry to publish statistics about the incidence of Proteus Syndrome. For example, we may use patient registry data to say how many people have Proteus Syndrome, what their age ranges are and how they are distributed geographically.

Who can join the registry?

• Anyone with a diagnosis of Proteus Syndrome can be part of the registry.

Other details:

• The Proteus Syndrome Patient Registry is not the same as our newsletter mailing list. You must opt-in to our Patient Registry by completing the form below.
• We will not use this list for marketing or fundraising.
• If our policy about acceptable use of our patient registry ever changes, you will be notified.
• You may opt-out of the patient registry at any time by emailing us