Paper about Moving Forward published on the Journal of Personalized Medicine
Written by the Moving Forward Team on September 20th 2021
The EHA has recently published a paper entitled “Perceptions about Research Participation among Individuals at Risk and Individuals with Premanifest Huntington’s Disease: A Survey conducted by the European Huntington Association” on a special issue of the Journal of Personalized Medicine dedicated to Huntington’s disease.
This article documents the main findings of our early work during the preparatory phase of Moving Forward, “Let’s Start Moving Forward”, that run between October and December 2020. The primary goal of this phase was to create a good knowledge base to plan meaningful actions that could later be implemented at a country level.
During this time, the EHA collected multiple data about the factors that may influence the willingness of people at risk and people with premanifest HD to participate in research and clinical trials.
Information was gathered in five different ways:
- by reviewing the existing literature on this topic
- by interviewing HD experts from sites that are efficient at engaging HD families in research
- by promoting a webinar to present the project to HD families and patient representatives and get suggestions to include in the action plan
- by inviting persons from HD families to become our panel of mentors and by having a meeting for them to provide their input to the project
- by creating a multi-language online survey to assess the perceptions and experiences regarding research participation among persons at risk for HD and with premanifest HD across Europe
Because we thought that this information could provide a significant contribution to understanding research participation in HD, we decided to prepare a scientific paper about this work, paying special attention to the survey results. A graphical summary of our paper is depicted here.
