Privacy Policy
Effective Date: May 2026
The SPG76 Research Foundation ("we," "our," or "the Foundation") is committed to protecting the privacy of everyone who visits our website or contacts us. This Privacy Policy describes what information we collect, how we use it, and the choices you have.
Information We Collect
We collect information in two ways:
Information you provide voluntarily. When you fill out our Patient Registry Form (hosted on Google Forms) or contact us via email, you may provide your name, email address, location, diagnostic information, and other details you choose to share. You are never required to provide any information, and you control what you share.
Information collected automatically. Our website is a static HTML site and does not use cookies, tracking scripts, or analytics tools at this time. If we add analytics in the future, this policy will be updated to reflect that change. Standard web server logs maintained by our hosting provider may record your IP address, browser type, and pages visited.
How We Use Your Information
Information you provide through the Patient Registry Form or via email is used to:
- Connect you with the SPG76 patient community
- Share relevant research updates and opportunities with your consent
- Support research planning by understanding the size and geographic distribution of the SPG76 patient population (using de-identified, aggregate data only)
- Respond to your inquiries
We will never use your information for marketing, advertising, or any commercial purpose.
How We Protect Your Information
Patient Registry Form responses are stored securely in Google's infrastructure, accessible only to authorized Foundation personnel. We limit access to personal information to the minimum number of people who need it to fulfill our mission. We do not store sensitive personal information on our website server.
Information Sharing
We do not sell, rent, or trade your personal information. We will never share your identifiable personal information with any third party — including researchers, institutions, or other organizations — without your explicit, informed consent. If a research opportunity arises that may be relevant to you, we will contact you to explain the opportunity and ask for your permission before sharing any of your information.
Google Forms
Our Patient Registry Form is hosted on Google Forms, which is subject to Google's Privacy Policy. By submitting the form, your responses are processed and stored by Google. We encourage you to review Google's privacy practices.
Your Rights and Choices
You have the right to:
- Request a copy of the personal information we hold about you
- Request correction of any inaccurate information
- Request deletion of your information from our records
- Withdraw your consent for us to contact you at any time
To exercise any of these rights, email us at contact@spg76research.org.
Children's Privacy
Our website is not directed at children under the age of 13. We do not knowingly collect personal information from children. If you are a parent or guardian and believe your child has submitted personal information to us, please contact us and we will promptly delete it.
Changes to This Policy
We may update this Privacy Policy from time to time. Changes will be posted on this page with an updated effective date. We encourage you to review this page periodically.
Contact Us
If you have any questions about this Privacy Policy or how we handle your information, please contact us:
SPG76 Research Foundation
Email: contact@spg76research.org