COMPLETION GUIDELINES

Before proceeding to the questionnaires, you will have the chance to read through the Participant Information Sheet. Please read through this carefully, you can also make a note/screenshot of the details provided. You can also request a copy of the Information Sheet from HDBOIsurvey@eurohuntington.org.

After you read the Information Sheet, you will be taken to a page where you will be asked to provide your Informed Consent to participate in the study. Take time to read through the Consent information, and make sure you are happy with each point before you proceed to click.

After you have provided your Informed Consent, you will be asked to respond to a few screening questions, to make sure that you are eligible to participate, given the research question and the aims of this study.

When you reach the main study questionnaire - please read every question and the proposed answers carefully, then choose/fill in the answer that best corresponds to your situation. Take all the time necessary to answer the questions, based on your experience. If necessary, you may ask family members or close friends to assist you.

If you have major issues with finalising the questionnaire, please let your contact at the Patient Group know (HDBOIsurvey@eurohuntington.org).We would like to kindly remind you that the incentive (£60/$75/€70 to the local patient group which facilitated your participation, for each questionnaire) can only be provided for fully completed questionnaires.