PRE-CONSENT

Thank you for your interest in this study, which is being conducted on behalf of AstraZeneca in collaboration with the British patient associations (Amyloidosis UK, Pumping Marvellous, Cardiomyopathy UK). The purpose of the research is to learn about your experience with ATTRv and health-related quality of life. We will first be asking you some questions to see if you are eligible to participate. Patients who meet the research criteria will be asked to take part in a 30-minute survey.

Any information you provide us with as part of the eligibility questions will be treated as confidential and will be combined with feedback from others like yourself. Your information will be kept secure at all times. You will remain pseudonymized, meaning your responses will be linked to an ID number rather than your name, so that you cannot be identified, and your information will not be passed to any other organization without your permission. Any Personal Data you give us as part of the eligibility questions will be deleted 5 years after study completion. It is ensured that adequate privacy protection is in place and requirements are met for the transfer of personal data outside of the United Kingdom under the UK GDPR and the Data Protection Act 2018 (DPA 2018).

If you are eligible to take part in the 30-minute survey you will be provided with a separate consent form to explain how the study works and your rights.

You have the right to withdraw at any time, without the need to provide a reason. For more information about your rights please contact us at privacy@astrazeneca.com.

If you have any questions, please contact Åsa Lindelöf, contact person for the study at the consulting company IQVIA, by email asa.lindeloef@IQVIA.com.