Privacy and your information

The short version

This website does not ask you to identify yourself, does not set advertising cookies, and does not sell anything. The only point at which you give us information is if you choose to fill in our registry form, which is entirely optional and has its own registry terms.

When you browse this site

The pages here are static files. We do not run advertising trackers or social media pixels on them.

Two things do involve a third party:

• Hosting. The site is served by Cloudflare, which processes standard technical request data such as IP address and browser type in order to deliver pages and protect against abuse.
• Fonts. Typefaces are loaded from Google Fonts, which means your browser makes a request to Google's servers when a page loads.

We do not use analytics. We do not count visits, and we cannot tell which pages you read or how long you stayed.

When you fill in our form

The registry form asks about you (or, with their permission, a family member) and any relatives affected by SCA12: contact details, location, genetic test results and any report you upload, symptoms, daily life, treatments and care, and the support you are looking for. The exact questions, and what you agree to by submitting, are in our registry terms — please read them before you begin.

Before you submit the form you agree to those terms, with one tick at the start. In short:

• Where it is kept. In our own database, hosted by Cloudflare — not a public spreadsheet, and read only by the volunteers who run Cure SCA12.
• Sharing. We never sell it. Your name and contact details are not shared with anyone outside Cure SCA12 without your permission. Information that does not identify you, such as numbers of patients, CAG counts, age at onset and symptoms, may be shared with doctors and researchers working on SCA12.
• How long. For as long as the registry exists, because a registry becomes more valuable for research the longer it runs.
• Someone else’s details. If you fill it in for someone else, you confirm you have their permission. It is their genetic and clinical information.

If you share your story

Anything you send us is treated as private until you explicitly agree to it being published. You decide whether your name appears, how much detail is included, and you can ask us to remove it at any time afterwards without giving a reason.

Children

This site is intended for adults. The registry form must be filled in by someone aged 18 or over; a parent or guardian may fill it in for someone younger. If you believe a child has submitted the form themselves, please contact us and we will remove it.

Your rights

You can ask us what information we hold about you, ask for it to be corrected, ask us to stop contacting you, or ask us to remove your name and contact details from the registry. If you do, we may keep the medical information you gave in a form that no longer identifies you, as the registry terms explain. Email info@sca12.org.

Cure SCA12 is based in India, where the Digital Personal Data Protection Act 2023 applies. The Act provides for complaints about how personal data is handled to be made to the Data Protection Board of India.

Changes to this page

If what we collect changes, this page changes with it.