General information

Thank you for completing this survey. We are undertaking this survey because we are working with the HSE to develop a specialist service for people with Huntington's disease and their families. We want to inform the development of this service by capturing the challenges HD affected families face now. We also want to use this survey as a benchmark to evaluate whether any new service improves the care and support families receive.

The survey is voluntary, and it is entirely up to you whether to complete it or not. We know families have many concerns about confidentiality, so this survey is anonymous. Apart from a few general questions that will help us interpret the results, it does not ask for any private information about you.

The results of the survey will be used to help improve services, and a report will be produced that will be shared with the HSE and other agencies involved in helping to improve services for people with HD. Only the overall results will be shared, and your individual responses cannot be seen by others. We may use the information you provide in the comments as quotes in the report to highlight particular issues.

Most of the questions in the survey follow the same format. They make a statement and then ask you to indicate how much you agree or disagree with it. Each question has a comment box, and we would be very grateful if you could add anything important from your experience. It will make the survey much richer.

We need to collect some anonymous information to help us understand the survey results.

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1. Which of the following best describes you?

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2. You are completing this survey...

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3. What is your gender?

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4. Which council area do you live in?

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5. What age group are you

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7% of survey complete.