Moving Forward Survey in Spain
The project Moving Forward is starting in Spain and we are committed to assess the specific needs of the Spanish HD community, especially of the younger members from the Spanish HD families (age between 18-40).
As you know, one of the main goals of Moving Forward is to learn more about the perceptions, experiences and needs regarding research participation among people at risk for HD and people in the presymptomatic HD phase, in order to facilitate the involvement of these two groups in studies and trials.
For this reason, Filipa Júlio, project manager, and Ruth Blanco, project coordinator in Spain, have developed an online survey that will enable the EHA to learn about these issues first-hand and tailor the Moving Forward project to the specific needs of the Spanish community.
If you are aperson at risk for Huntington’s disease or an asymptomatic HD gene carrier living in Spain, we ask you to collaborate in this Project by filling in this short and completely anonymous survey. The survey will be open until 15 December 2021.
If you are not part of any of these groups, you can also help us! Please share this survey with your family members who fit into this profile and encourage them to participate, it is very important!
With your valuable collaboration, you will help us to better understand what the current research situation in Spain is and what are the needs and concerns of families who, in one way or another, live with Huntington’s disease in this country, so that we can adjust the actions of Moving Forward to the real HD needs.