Moving Forward Poster Trilogy
at the EHDN2022 Bologna Meeting
– Written by the Moving Forward Team on October 17th, 2022
Photo 1. Filipa and Ruth next to the Moving Forward Roll-Up
Filipa Júlio, the Moving Forward Project Manager, and Ruth Blanco, the Moving Forward Project Coordinator in Spain, attended the EHDN Plenary Meeting in Bologna last month (Photo 1).
This was the first opportunity to present in-person the Moving Forward (MF) work to more than 1000 participants from all over the world who attended the largest and more important international HD conference.
The Moving Forward team has created a poster trilogy to showcase the work done over the last months: “Factors Influencing Research Participation in Huntington’s Disease: Clues From Southern and Eastern Europe” ; “Let Us Talk: A Communication Skills Training Course for Russian Healthcare Professionals Working with Huntington’s Disease”; “The Uncertainty of Waiting: Assessing the Impact of the First Spanish Meeting for Premanifest and Potential Carriers of Huntington’s Disease”.
“Factors Influencing Research Participation in Huntington’s Disease: Clues from Southern and Eastern Europe” analysed and compared the results from the two surveys conducted in Spain and Russia, the two countries who welcomed the project, to understand the perceptions and experiences regarding research participation of the local communities of people at risk for HD and people with premanifest HD. The main conclusions were that these distinct HD communities who are welcoming the MF project initiatives are highly motivated to participate in research, albeit their limited experience and knowledge and that the uneven access to care and research across Europe seems to influence the factors underlying this motivation. Our findings also highlighted the relevance of country-specific interventions to encourage informed research participation in preclinical HD.
Photo 2. Filipa presents the “Let Us Talk” poster to Osvaldo Tassano (Italy)
“Let Us Talk: A Communication Skills Training Course for Russian Healthcare Professionals Working with Huntington’s Disease” presented the impact of a web-based communication skills training course created and implemented by the MF team to educate Russian healthcare professionals on ways to effectively communicate and relate to HD patients and families. The poster showed that this training seems to have improved the communication skills of Russian healthcare professionals, who reported more appropriate behaviours towards HD families after the course. Moreover, it showed that this training appears to be a good model for the EHA to replicate in other countries and enhance the doctor-HD patient relationship across Europe (Photo 2).
“The Uncertainty of Waiting: Assessing the Impact of the First Spanish Meeting for Premanifest and Potential Carriers of Huntington’s Disease” described the impact of the first Spanish meeting exclusively dedicated to persons at risk for HD and persons with premanifest HD by presenting the main results of the feedback survey filled by the attendees. This work demonstrated that this meeting was a crucial entrance door for these groups to connect with their peers and engage with local associations and healthcare professionals and that the informal, non-clinical approach seems to be effective in getting these specific populations closer to information and support. The poster also demonstrated that this event generated relevant topics to address in actions tailored to these groups. (Photos 3-5)
Photo 3. Filipa presenting “The Uncertainty of Waiting” poster to different representatives from Spanish HD Associations
Photo 4. Filipa and Ruth with representatives from Spanish HD Associations next to “The Uncertainty of Waiting” poster
