CureSCA12

Registry

Terms of the Cure SCA12 registry

What you agree to when you join our patient registry, in plain English. These are the same terms shown at the start of the registry form.

The registry is how the community grows and how SCA12 research gets the patient information it needs. Everyone who fills in the form ticks one box to agree to these terms. They took effect on 12 September 2026.

  1. Who we are

    Cure SCA12 is a patient-led community for people with SCA12 and their families, run by volunteers (an unincorporated volunteer group based in India). You can contact us at info@sca12.org.

  2. What we collect

    The information you give in this form: the patient’s name, your relationship to them, contact details, city and state, family history, CAG repeat result, age at onset and current age, doctors consulted, symptoms, medicines, therapies and lifestyle changes.

  3. Why we collect it

    To:

    • contact you and welcome you into the community and its WhatsApp group;
    • build a registry of people with SCA12, so we understand how many people it affects, where they are, and how it affects them;
    • support research into SCA12, including telling you about studies you may be able to take part in.

  4. Who can see it

    The volunteers who run Cure SCA12. The form and its responses are stored in Google Forms and Google Sheets.

  5. Sharing

    We will never sell your information. We will not share your name or contact details with anyone outside Cure SCA12 without your permission. We may share information that does not identify you, such as numbers of patients, repeat results, age at onset and symptoms, with doctors and researchers working on SCA12.

  6. How long we keep it

    For as long as the registry exists. A registry becomes more valuable for research the longer it runs.

  7. Changing your mind

    You can ask us at any time, by emailing info@sca12.org, to stop contacting you, to correct your details, or to remove your name and contact details. If you do, we may keep the medical information you gave in a form that no longer identifies you, so that the registry’s numbers stay accurate.

  8. Filling in the form for someone else

    If you are not the patient named in this form, you confirm that you have their permission to share their information.

  9. Contact

    By submitting this form you agree that Cure SCA12 may contact you by WhatsApp, phone or email.

  10. Not medical advice

    Cure SCA12 and its WhatsApp group are for peer support. Nothing shared there is medical advice. Please take questions about your own care to your own doctor.

  11. Age

    You must be 18 or over to fill in this form. A parent or guardian may fill it in for someone younger.

  12. Changes

    If these terms change, we will tell registry members before the change applies to their information.

Go to the registry form