What matters most in Huntington's Disease?

Survey on what matters most in Huntington's Disease

Thank you for taking part in this survey. It has been developed by the European Huntington Association (EHA) in collaboration with the European Federation of Neurological Associations (EFNA).

This survey is open to anyone interested in Huntington’s disease (HD), including people affected by the disease, family members, caregivers, professionals, researchers, and others who would like to contribute to shedding light on the true impact and burden of HD.

The purpose of this survey is to gather information that can help decisionmakers understand the complexity and severity of Huntington’s Disease and the support needed to reduce its impact on families with this diagnosis. Your insights will help inform patient advocacy efforts, improve awareness, and support evidence-based policy and decision-making at national and European levels.

Estimated time to complete:
This survey takes approximately 15 minutes to complete.

How your data will be used:
The information you provide will be analysed in an aggregated and anonymised format. The results may be used in reports, policy briefings, awareness campaigns, and other advocacy activities aimed at improving care, services, and quality of life for people living with neurological conditions. Individual responses will never be identifiable in any outputs.

Privacy and data protection:
This survey fully complies with the General Data Protection Regulation (GDPR) and EFNA’s data protection and privacy policies.
No personally identifiable information (such as your name, contact details, or exact location) will be collected.
All responses will remain anonymous and confidential.
Data will be securely stored and used solely for the purposes described above.

Ethical oversight:
This survey has been reviewed and approved by EFNA’s Ethics Review Board to ensure it meets appropriate ethical and data protection standards.
Reflecting on your experience of living with Huntington’s disease or supporting a loved one with the disease may bring up difficult emotions. If you need support to handle these, please consider reaching out to the HD association in your country.

Voluntary participation:
Your participation is entirely voluntary, and you may stop completing the survey at any time.

Contact information:
If you have any questions about this survey or how your data will be used, please contact:
Filipa Júlio - filipa@eurohuntington.org

Consent statement:
In the next page you will find an informed consent statement to participate in this survey under the conditions described above.

Thank you for your participation in this survey. Your voice matters and will contribute to meaningful change for the neurological community.

Question Title

1. I have read and understand that participation in this survey is voluntary, that my data will be kept confidential and securely stored, and that the collected data will be used in an aggregated and anonymised format for reports, policy briefings, awareness campaigns, and other advocacy activities aimed at improving care, services, and quality of life for people living with Huntington's disease and other neurological conditions.

Yes