HD research news - medical research into treatment & prevention

Test the new European HD Network online questionnaire

March 2008

HDQ-D1 has been developed as a part of European Huntington's Disease Network Quality of Life Working Group Project entitled 'Capturing Quality of Life in Huntington's Disease Patients'.

HDQ-D1 is a draft long-list of items identified through interviews. With your participation we would like to identify the most appropriate items in order to devise a questionnaire that can adequately gauge the quality of life of people with Huntington's disease (HD).

We would like to invite responses from at risk individuals, gene carriers, Juvenile HD patients, HD patients at early, intermediate and advanced stages in order to see which are the best items to include in the final version in terms of importance and relevance to patients' lives.

If you are a specialist, partner or a carer you could complete the questionnaire from the point of view of your most familiar stage of disease. In that case please choose 'other' option to 'information about yourself' item and indicate in the following text-box your position and what stage of Huntington's you are most familiar with.

• To take the survey go to: http://www.surveymonkey.com/s.aspx?sm=6PfwI8X3EI7n3n_2bdAqoNNA_3d_3d