We are launching “Moving Forward”. The new project aims at including people from Huntington’s disease families in drug development by facilitating an active and long-lasting commitment from patients and family members.
Written by Filipa Júlio, Project Manager in Moving Forward
Between September 2016 and December 2019, the European Huntington Association (EHA) has run multiple European and country-specific initiatives to make the Huntington’s disease (HD) community “Stronger Together” .
Great progress has been achieved in building a bridge between research and Huntington families, but the job is not done – yet.
We want to keep up the momentum until effective treatments are accessible for all those diagnosed with Huntington’s disease.
Now, the next essential step for the EHA is to get the HD community to “Move Forward”, and we have conceived a plan to make this happen.
The Project “Moving Forward” will focus on mobilizing Huntington families (particularly individuals in a premanifest/prodromal HD stage) to ensure there is a continuous flow of people signing up to take part in research, and prevent unnecessary delays in HD clinical trials due to the slow recruitment of participants.
A team of patient advocates will develop both face-to-face and web-based actions to reach the HD community and achieve the following goals:
- Increase Trial Awareness
- Increase Health Literacy and Reduce Therapeutic Misconception and Misestimation
- Reduce the Impact of Perceived Barriers to Study Participation
- Build Up the Clinical Site Team Skills to Communicate and Relate to Study Participants
- Increase Clinical Trial Readiness
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The key components of the work done by this team will be peer-to-peer communication, dialogue and providing support to potential participants from the target population.
The Project “Moving Forward” was designed over a three-year period, including focused “on the ground” activities in three countries during the first year and an expansion to more countries the following two years.
The preliminary phase of this plan has just begun: The Project “Let’s Start Moving Forward”. A project manager was already enrolled in the team – Filipa Júlio, a neuropsychologist who is a EHA Board member since 2012 – and the EHA is happy to announce that this pilot project was endorsed by Roche Pharmaceuticals.
This project will thrive to make the HD community move forward and be ready to enter and endure the several HD clinical trials planned for the near future – and showing that We are Here for Us.
Want to learn more about the project and give input?
Join our webinar!