WHAT IS MOVING FORWARD?

At the end of 2020, the European Huntington Association (EHA) launched a new Project called “Moving Forward – Toward a Future with Effective Disease-Modifying Therapies for Huntington’s Disease”.

The background of this project is that despite the many significant advances in Huntington’s disease (HD) studies and trials over the last decade, with several new compounds and therapies being developed and clinically tested or on the verge of being so, effective treatments that can change or stop HD before the onset of disabling symptoms are still unavailable. So the job is not done, yet.

Because we strongly believe that HD clinical progress is only possible if patients and families show an active, informed, and long-lasting commitment with research, Moving Forward was created to mobilize the HD community to participate in studies and trials.

Specifically, this project wants to hear and engage those traditionally less involved in research – persons at risk for HD and persons with premanifest HD. We believe that these groups have different needs, worries and wishes regarding research participation compared to people in more advanced HD stages. Therefore, we need to design and implement tailored actions to make sure there will be a continuous flow of people signing up to take part in studies, and guarantee that the community is ready when the first trials designed to address preclinical HD stages are launched.

OUR FIVE CENTRAL GOALS

Increase trial awareness

Because those not aware of studies and trials cannot participate in them.

Increase health literacy

Therapeutic misconception happens when individuals do not understand that the primary purpose of research is to produce generalizable knowledge and not their own personal benefit; therapeutic misestimation happens when individuals tend to overestimate trial benefits or underestimate trial risks; the project will address both issues, as they affect the capacity to obtain, process, and understand basic health information, which is needed to make appropriate decisions and give a truly informed consent to participate in research.

Reduce barriers to study participation

Things such as financial burden, time constraints, extended timeframe of studies/trials, anxiety with testing, or fear of invasive procedures can prevent individuals from participating in research; the perceived and/or real tangible obstacles to research participation need to be addressed and solutions need to be found in collaboration with the sites, local HD associations or other.

Build up the HD professionals’ skills on ways to communicate and relate with HD families

We claim that relating to persons at risk or with premanifest HD requires other communication skills than those used when relating to manifest HD patients; we will work together with the site teams, local HD associations and other to improve the quality of the services provided to these specific HD groups; training the site team skills on how to communicate, welcome and relate to study participants and guaranteeing the regular feedback about the study and how the study is experienced will be important action lines of our work.

Increase clinical trial readiness

When the first clinical trials designed to address premanifest HD stages are launched, we believe that it will be vital to anticipate and work on the factors that can pose a bottleneck to a fast and smooth recruitment of suitable participants; we will collaborate with all the research key players so that all the perceived barriers to study participation are early addressed; we will implement a follow-up circuit, where the Moving Forward team will work as a link between genetic centres, clinical trial sites, primary care units and national/local HD associations to maximize referrals; we also will actively disseminate information about clinical trials (both through face-to-face and web-based outreach campaigns) to accomplish this goal.

We firmly trust that achieving these goals will bring patients and families closer to effective disease-modifying therapies for HD. Additionally, we believe that the EHA is in a unique position to coordinate and run multinational projects such as Moving Forward, helping to build bridges and facilitate communication between all the key players and stakeholders that make HD research and clinical care move forward.

The rationale and details of Moving Forward were presented during our Webinar entitled “How can we get involved in drug development?”

Filipa Júlio

Project Manager

filipa@eurohuntington.org

Astri Arnesen

EHA President

astri@eurohuntington.org

Claudia Azañedo

Web Designer

communication@eurohuntington.org

Ruth Blanco

Project Coordinator in Spain

ruth@ehamovingforward.org

Zaynab Umakhanova

Project Coordinator in Russia

zaynab@ehamovingforward.org