HD families have always lived with significant unmet needs and a constant sense of urgency for treatments that can delay or stop the disease and its profound impact on their lives.
HD-R-Ready is a project designed to address this urgency by understanding and shaping the factors that enable experimental treatments and clinical trials to be feasible and effective in European countries.
The project focuses on:
By informing how clinical trials can be designed and implemented in a more family-friendly way, the insights from the HD-R-Ready project will enable higher-quality studies and help the HD community gain earlier access to effective treatments.
The research landscape is evolving quickly, with a growing number of ongoing and planned clinical trials, all seeking effective treatments for HD.
While this progress is very encouraging, there are and there will be difficulties in identifying, enrolling and retaining enough eligible participants for these trials. This can obviously delay the path to treatment for HD and places a significant burden on HD families and professionals.
Therefore, the EHA, the German and the Slovak Associations are rolling up their sleeves and actively working to understand and improve the conditions needed for studies and clinical trials to move forward with the speed and quality that families are hoping for.
Through this pilot project, the EHA, the German and the Slovak Associations aim to:
The pilot phase will be implemented in Slovakia and Germany, two countries that represent distinct yet complementary research and healthcare contexts within Europe.
Germany was selected because of its large, active, and committed HD community, brought together by a well-established HD organization with over 50 years of history. Germany has one of the strongest HD clinical and research infrastructures in the world, and is involved in multiple HD clinical trials. However, despite this high level of activity, a significant number of well-equipped and well-regarded clinical centers remain underrepresented in the current HD trial landscape. Germany therefore provides an opportunity to identify and engage new potential sites, improve coordination among stakeholders, and assess how patient-oriented site mapping and systematic family feedback can enhance trial performance and expand the research environment.
Slovakia was selected because it has an active and committed HD community supported by a national patient organization, alongside recognized healthcare professionals with HD expertise, but limited involvement in international HD clinical trials. As a smaller country with fewer trial opportunities, Slovakia offers an important setting to explore how targeted engagement, capacity-building, and closer collaboration between families, associations, and clinical centers can improve readiness for future research participation. The Slovak context allows the EHA to address barriers related to limited trial exposure, research literacy, and access, which are common challenges in several European countries.
Spoločnosť pre pomoc pri Huntingtonovej chorobe (SPHCH) was founded in 1994 and operated continuously until 2016, when its activities were temporarily suspended.
In 2019, the organization was successfully re-established and, with renewed energy, the team embraced the challenges of the 21st century. The Association transitioned to a fully digital mode of operation and, within their capacities, the team began engaging in European and global initiatives.
The Association organizes regular online meetings and in-person meetings at least once a year. Currently, the Association has 180 members, both family members and professionals.
Since resuming its activities in 2019, the priority has been to bring clinical trials of new treatments to Slovakia. The team believes that 2026 will be a breakthrough year and that, with the support of the HD-R-Ready programme, the Slovak Association will achieve this important goal.
“The SPHCH has joined the HD-R-Ready programme. We made this decision because Slovakia is approaching the opportunity to conduct clinical trials of new treatments for Huntington’s disease for the very first time. Our goal is to mobilize the community and bring our long-standing efforts to a successful outcome.
Participation in the HD-R-Ready project is especially important for us as it allows us to better understand our capabilities, the expectations of our community members, and the factors that may motivate or discourage them from taking part in clinical trials. These insights will enable us to more effectively support Slovak clinical centres in the successful implementation of new treatment trials.
We believe that Slovakia no longer wants to stand aside and wait for trial results from other countries. We want to be an active part of this effort and contribute to the search for an effective treatment for Huntington’s disease.”
President of the SPHCH Board
“Being part of the HD-R-Ready project means strengthening the collective voice of people and families affected by Huntington’s disease and ensuring that their lived experiences are reflected in research and care.”
President of the DHH Board
HD-R-Ready started in the last quarter of 2025.
From the start, one member from each local association has been working hand in hand with the EHA to design and implement the actions of the project.
A project logo was created, as well as a dedicated section on the EHA webpage and on the Slovak and German HD Associations webpages.
We have developed a country-specific online survey to better understand the needs and experiences of the Slovak and German HD communities and get their feedback about the obstacles and facilitators to their participation in research.
245 respondents have kindly shared their thoughts and experiences with us.
We will keep you updated about our ongoing and future work.
If you have any questions about HD-R-Ready, please don’t hesitate to reach out: filipa@eurohuntington.org
Taken together, the survey results referring to the thoughts and experiences about HD research suggest that, while the German and the Slovak communities are equally interested in research, the experience of participating in research (high in the German community and low in the Slovak community) influences the level of knowledge people report about HD research (higher in the German community), but also the interest people show in participating in research (higher in the Slovak community).
These findings may guide and inform the efforts to educate and
empower the community about research participation.
During the week of 4–9 May 2026, Filipa travelled across Slovakia alongside EHA Board Member and President of the Slovak Huntington Association, Vladimir Vaclavik. Their mission was twofold: to visit the country’s three HD clinical centres and learn more about the care and research landscape, and to present the project at the Slovak HD Association national conference in Bratislava.
The trip took them to Zvolen, Košice and Bratislava, where they met the clinical teams supporting HD families at central hospitals and heard their perspectives on Slovakia’s clinical and research infrastructures, including how they might be strengthened to better serve people impacted by Huntington’s disease.
What stood out most was the remarkable openness, availability, and collaborative spirit of the clinical teams, and the strong, respectful partnerships they have built with families.
The visit concluded with a presentation of the HD-R-Ready project and its survey results to the Slovak HD community at the national conference, a valuable opportunity to connect with families and professionals, listen to their needs, and explore together how HD research can become more accessible, feasible, and family-friendly.
We would like to thank the Slovak HD community for their warm welcome and generous collaboration. These moments remind us that our greatest strength lies in the relationships we build, the knowledge we share, and what we can achieve together for HD families across Europe.
After our visit to Slovakia, on the week of 8–13 June 2026, Filipa travelled across Germany to visit some of the country’s HD expert centres and deepen the EHA’s partnership with the Deutsche Huntington-Hilfe e.V. (DHH). It was a week of planes, trains and automobiles — many kilometres covered across a luxuriously green country — all in service of one of the project’s core ideas: as HD research expands rapidly, HD sites and HD teams need to be ready to expand with it.
Germany has long been one of the epicenters of Huntington’s Disease care and research, which is exactly why this leg of HD-R-Ready mattered so much. The mission was to map the German HD landscape up close — visiting large, long-established and internationally renowned centres alongside lesser-known but highly capable sites, and listening to the teams who work with HD families every day.
Over four days, Filipa visited four HD centres: Taufkirchen, Regensburg, Ulm and Rostock. The stops included Ulm — where the European Huntington’s Disease Network (EHDN) was founded in 2004 — and Taufkirchen, both established and renowned centres, as well as Regensburg and Rostock, lesser-known sites with remarkable resources and dedication. At each one, HD experts generously shared their experiences and insights on the past, present and future of HD care and research in Germany.
What stood out, again and again, was the openness of the clinical teams and their willingness to reflect honestly on how the German HD trial landscape can grow. Despite Germany’s strong clinical and research infrastructure, a number of well-equipped and well-regarded centres remain underrepresented in the current HD trial landscape — and conversations like these are a first step towards changing that.
A special thank you to Dr. Alžběta Mühlbäck and Angelika Hacker for making this journey possible. We would also like to thank Nathalie Walk, Roswitha Moser, Gabriele Ritter and Richard Hegewald from the DHH for their support, and to every HD expert who took the time to meet, talk and share.
We look forward to the next collaborative steps of the HD-R-Ready journey!
