06. How will my information / answers be used?

The research will be conducted in accordance with the British Healthcare Business Intelligence Association (BHBIA), and the Market Research Society (MRS) codes of conduct and complies fully with Data Protection legislation. This means that anyone who agrees to take part in the research will remain anonymous, unless you choose to share your identity with us. No names or contact details will be shared with any third party. You do not have to answer any questions you don’t want to and you can withdraw from the research at any time. Your individual responses to the survey questions cannot be linked back to you. Any personal data collected about you will be treated confidentially and only used for the purposes of this project. It may be stored beyond the end of this project, for up to 12 months.

At any time you can ask to know what personal data are being held about you and for these to be amended or destroyed. Please contact [email protected] if you have such a request.

For more information about your rights please see Synergy's privacy notice, which is available at https://www.synergyresearch.co.uk/privacy-policy/

The answers from the surveys will be analysed by Synergy Healthcare Research. All the survey answers will be combined together and will be used to create an anonymised report, which Synergy will share with DEBRA UK and the EB Priority Setting Partnership. DEBRA UK will use the anonymised report to identify the most important unanswered questions about EB as determined by the EB community.

We’ll also share the anonymised findings from the survey with key stakeholders, like politicians, research organisations, or the wider DEBRA and EB community. The results of this study will also be published on the DEBRA UK and JLA websites, as well as potentially other academic journals.

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