Community and Patient Preference Research (CaPPRe) is working on behalf of a pharmaceutical company to conduct research with people who have been diagnosed with a certain disease to understand what people value from treatments. To avoid potential bias, we will inform you of the sponsoring pharmaceutical company at the end of the survey.

Participation is voluntary. If you are found to be eligible, we would like you to complete an online survey which should take approximately 20-25 minutes to complete. You will be shown several scenarios for different treatment options and asked to choose which treatment option you personally prefer. The answers to these questions will indicate which factors are most important to you when choosing between treatments. We will also ask you about the impact on your health and life, your experiences with the treatment you have received, and other demographic information such as the postcode you live in.

When completing the online survey, you should use a device that has a screen that is at least 10 inches in size (for example, desktop computer, laptop computer or standard size tablet, not a mobile phone).

The results may be published and/or presented in a variety of forums, and will be used for commercial purposes. In any publication and/or presentation, information will be provided in a combined form such that no individual person can be identified. The sponsoring pharmaceutical company will be provided with a report of the findings containing only combined de-identified data. The research data will be kept securely for a period of 5 years. At the end of this storage period your personal data captured in this research will be destroyed.

If you qualify to participate, by way of appreciation for your time and participation you will receive $45 via e-gift card. Please note that we will collect your full name and email for this – this personal information will only be used to compensate you and will be deleted after this has been sent. Payments will be made a week after the research finishes.

Sometimes we have people trying to complete the survey who do not genuinely have the condition, which is detected when we audit our data. As part of our auditing process, we may need to recontact you to ask some additional questions to ensure accurate capture of the preferences. Only genuine respondents will be compensated.

We have considered the views of participants when designing these questions, but it is possible that you may find some of the questions uncomfortable. Your participation is entirely voluntary, and you can stop at any time by exiting the survey window.

If you find the survey stressful and would like to seek additional support and advice, please speak to your physician.

• In the case of an emergency, call 000

Taking part in this research is unlikely to be of direct benefit to you. The purpose of this research may help improve understanding of perspectives on the benefits and challenges of treatment options and the results may be published so that others can learn from them.

There is no obligation for you to be involved in this research, and if you decide to participate, you may withdraw from the research at any time by ceasing to continue with the survey and closing the survey window. Data are collected as questions are filled in the survey. While you can withdraw by no longer completing questions, data from questions already completed will be kept and may be used for analysis.

CaPPRe respects and understands your privacy is very important. Any information collected during this research project that can identify you will remain confidential. Your personal details will not be forwarded to any other parties, nor will you be contacted by CaPPRe for anything other than this research project unless you choose to be. Your data will be stored in a secure encrypted (protected) environment in Australia and only CaPPRe will have access to the data. Your information will only be used for the purpose of this research project, and it will only be disclosed with your permission, except as required by law.

Any information you provide will be collected by CaPPRe. Any information that is shared with the sponsoring pharmaceutical company will be done in report form. The personal information you provide will not be shared.

Community and Patient Preference Research Pty Ltd (“CaPPRe”, ABN 68 610 716 197) respects and upholds your rights under the Australian Privacy Principles (“APPs”) contained in the Privacy Act 1988 (Cth) (“Privacy Act”). CaPPRe also adheres to the Privacy (Market and Social Research) Code 2014 (“Code”). For more information about the Privacy Act, the APPs and the Code visit www.oaic.gov.au

You can read more about our Privacy Policy on our website https://www.cappre.com.au/PrivacyPolicy/

If you have any questions or concerns, you can contact CaPPRe at samson.kong@cappre.com.au

The Bellberry Human Research Ethics Committee has reviewed and approved this research project in accordance with the National Statement on Ethical Conduct in Human Research (2007) incorporating all updates. This Statement has been developed to protect the interests of people who agree to participate in human research studies. Should you wish to discuss the research project or view a copy of the Complaint procedure with someone not directly involved, particularly in relation to matters concerning policies, information or complaints about the conduct of the research project or your rights as a participant, you may contact the Operations Manager, Bellberry Human Research Ethics Committee 08 8361 3222. Approval number: 2022-08-806

If during the survey, you mention a potential side effect or product complaint for a treatment marketed by the Sponsor Company, this must be reported to the Sponsor Company for the ongoing monitoring of their products.