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Invitation to participate in a quality of life survey

EHDN Quality of Life Working Group Project: Measuring Quality of Life in Huntington's:

This study on 'Measuring Quality of Life in Huntington's' is being carried out with the support of the European Huntington's Disease Network and our objective is to develop a new questionnaire to evaluate the quality of life specifically for people with Huntington's disease (HD). We would like to invite responses from people from all stages of Huntington's disease (including people who are gene carriers with no symptoms, and persons who have HD in their families and have not taken the genetic test ) AND also from their family members, partners, friends and/or carers of people living with Huntington's disease. It will be of great value to have information both from someone living with HD and from another person who knows them well. Your participation will involve completing an online questionnaire which will take 30 minutes. There are two versions of this questionnaire:

If you are a person living with HD, please follow this link to complete the HD Questionnaire: Click here to take survey

If you are a family member, partner, friend and/or carer, please follow this link to complete the Proxy Questionnaire: Click here to take survey

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Source: EHDN

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