This confidentiality policy sets out how Reverse Rett uses and protects any information that you give us when you sign up to our Patient Registry, and of your rights therein.
Reverse Rett is committed to ensuring that your privacy is protected, and abides by the Data Protection Act 1998, and by GDPR 2018, where some of the information disclosed will fall into the category of sensitive personal information. Should we ask you to provide this, or certain other information by which you can be identified when using this website, you can be assured that it will only be used in accordance with this confidentiality statement and our privacy policy.
Reverse Rett may change this policy by updating this page. You should routinely check this page to ensure that you are happy with any changes. This policy is effective from 14th May 2020.
The UK Rett Syndrome Patient Registry
The purpose of the UK Rett Syndrome Patient Registry at Reverse Rett is to collect information about UK patients with Rett Syndrome so that we are able to locate patients who may be eligible to participate in studies and clinical trials. The Registry is a Reverse Rett initiative and is owned by Reverse Rett. There is no cost for you to participate.
If you join the registry, you will be asked to provide medical information on your disease and diagnosis.
Should you change your mind and wish to withdraw your data from the registry, you will be free to do so without having to provide any explanation. Simply contact us at Reverse Rett and all of your data will be removed.
You will be asked to update your registry information at least once per year. If the registry cannot contact you, your account may become inactive.
By joining the registry you do not give away any legal rights or benefits to which you are otherwise entitled. If you do join, you can change your mind and withdraw from the registry at any time.
By affirming that you agree with the Confidentiality Policy, you confirm that you understand the content of the policy, and have had time to consider fully whether you want to join the UK Rett Syndrome Patient Registry at Reverse Rett.
By affirming that you agree with the Confidentiality Policy, you confirm that you agree to participate.
By affirming that you agree with the Confidentiality Policy, you confirm that you understand that your participation in the registry is voluntary and that you can change your mind and withdraw at any time.
