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?”

Here is a little message from the Moving Forward team, on December 2021.

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Filipa Júlio

Project Manager

filipa@eurohuntington.org

Astri Arnesen

EHA President

astri@eurohuntington.org

Beatriz Campaniço

Communication Manager

communication@eurohuntington.org

Ruth Blanco

Project Coordinator in Spain

ruth@ehamovingforward.org

Zaynab Umakhanova

Project Coordinator in Russia

zaynab@ehamovingforward.org

Julie Skarberg

Project Coordinator in Norway

julie@ehamovingforward.org

Maria Linné

Project Coordinator in Sweden

maria@ehamovingforward.org

« Fabulous Project » « Very important project. You are doing your job very professionally, supporting and connecting people with HD in Europe, working together with researchers, neurologists, geneticists and other healthcare professionals, sharing information with HD families. »
Learn more
« Excellent initiative from the European Huntington Association, with all kinds of information and contents » « I had the pleasure of participating in one of the most spectacular HD events of my life thanks to the European Huntington Association »
Learn more
"Moving Forward is a fantastic project by the EHA that provides educational and emotional support to HD families! I am glad that I had the opportunity to be a part of its activities. It is an important step in connecting people affected by HD worldwide, in improving care, and in strengthening the HD community!"
Learn more
"I believe this is a unique project that moves science and society forward - towards awareness and a better quality of life for families, towards an understanding of the disease and, therefore, knowledge about the behaviour of people who suffer from HD, towards a better research process. I would like to say a special word about the website of the project - this is a unique place where you can find everything - books related to Huntington's disease, various resources on nutrition and care, clinical guidelines from different countries, video interviews with families. There is no other resource like it in the world."
Learn more
"The Moving Forward meeting has been a very positive experience for all of us, which has allowed us not only to strengthen the bond between clinicians, researchers, biobank and the patients and families affected by this disease, but also to share hopes and realities. Thank you very much for your effort and participation".
Learn more
"Moving Forward brings us all together, researchers, professionals, family members and patients. It gives us a face and enables us to speak without barriers, without fear, with confidence. The essential ingredient of meetings such as the Moving Forward meeting in Valencia are emotions, and these are undoubtedly provided by the testimonies of patients and their families. It is a privilege to be part of the unconditional HD community".
Learn more
"Young people who are pre-symptomatic or possible carriers of Huntington's disease are a group with great potential but often invisible. We need to pay more attention and increase the participation of this group in the global health and social movement of the wider Huntington family, as they are the ones who must lead the change. Moving Forward is an ideal project to promote unity, strength and coordination among those who share the same situation. It is about pursuing common goals and building a path towards a future in which the prevention of the onset of the disease is one of the research priorities."
Learn more
“Knowledge is Key - that is why the Moving Forward project is so important. It helps to inform the Huntington’s community about upcoming trials, supports people by providing information about the disease and empowers people by helping them raise their voices. I especially love the list of books related to HD in the bookshelf section. The Moving Forward project is an important resource for the HD community.”
Learn more
All these initiatives are a relief, they are comforting. They help on a daily basis, both the professionals who are dedicated to care, as well as the patients and their families. Therefore, thank you to the Moving Forward project!
Learn more
"First of all, I would like to thank you for your work and that of the whole team, not only for this project, but also for facilitating the dissemination of all the information available in Spanish, so that it can be accessible to everyone, it is invaluable, and the genetic services, when diagnosing the disease, should inform of your existence and the resources you offer. And for the psychological support project, not only for this disease, but to face any difficulty in life, it has been a gift."
Learn more

What people say about us

« Fabulous Project » « Very important project. You are doing your job very professionally, supporting and connecting people with HD in Europe, working together with researchers, neurologists, geneticists and other healthcare professionals, sharing information with HD families. »
Dimitri Poffé
Dimitri PofféFrench Traveller and Founder of the Project “Explore for Huntington”
« Excellent initiative from the European Huntington Association, with all kinds of information and contents » « I had the pleasure of participating in one of the most spectacular HD events of my life thanks to the European Huntington Association »
Saúl Martínez-Horta
Saúl Martínez-HortaNeuropsychologist and Researcher at Hospital Sant Pau Barcelona - Spain
"Moving Forward is a fantastic project by the EHA that provides educational and emotional support to HD families! I am glad that I had the opportunity to be a part of its activities. It is an important step in connecting people affected by HD worldwide, in improving care, and in strengthening the HD community!"
Yury Seliverstov, MD, PhD
Yury Seliverstov, MD, PhDManager Company
"I believe this is a unique project that moves science and society forward - towards awareness and a better quality of life for families, towards an understanding of the disease and, therefore, knowledge about the behaviour of people who suffer from HD, towards a better research process. I would like to say a special word about the website of the project - this is a unique place where you can find everything - books related to Huntington's disease, various resources on nutrition and care, clinical guidelines from different countries, video interviews with families. There is no other resource like it in the world."
Yulia Tsvetkova
Yulia TsvetkovaRussian HD family member
"The Moving Forward meeting has been a very positive experience for all of us, which has allowed us not only to strengthen the bond between clinicians, researchers, biobank and the patients and families affected by this disease, but also to share hopes and realities. Thank you very much for your effort and participation".
Carmen Peiró
Carmen PeiróNeurologist at La Fe Hospital in Valencia, Spain
"Moving Forward brings us all together, researchers, professionals, family members and patients. It gives us a face and enables us to speak without barriers, without fear, with confidence. The essential ingredient of meetings such as the Moving Forward meeting in Valencia are emotions, and these are undoubtedly provided by the testimonies of patients and their families. It is a privilege to be part of the unconditional HD community".
Ana Pilar Gómez Escribano
Ana Pilar Gómez EscribanoRare Disease Researcher at La Fe Institute of Valencia, Spain
"Young people who are pre-symptomatic or possible carriers of Huntington's disease are a group with great potential but often invisible. We need to pay more attention and increase the participation of this group in the global health and social movement of the wider Huntington family, as they are the ones who must lead the change. Moving Forward is an ideal project to promote unity, strength and coordination among those who share the same situation. It is about pursuing common goals and building a path towards a future in which the prevention of the onset of the disease is one of the research priorities."
Eva Calabuig Tortosa
Eva Calabuig TortosaSocial worker at Asociación Valenciana de Enfermedad de Huntington (AVAEH), Valencia, Spain
“Knowledge is Key - that is why the Moving Forward project is so important. It helps to inform the Huntington’s community about upcoming trials, supports people by providing information about the disease and empowers people by helping them raise their voices. I especially love the list of books related to HD in the bookshelf section. The Moving Forward project is an important resource for the HD community.”
Erin Paterson
Erin PatersonPublished author and HD activist from Canada
All these initiatives are a relief, they are comforting. They help on a daily basis, both the professionals who are dedicated to care, as well as the patients and their families. Therefore, thank you to the Moving Forward project!
Dr. Jesús Pérez
Dr. Jesús PérezNeurologist and Researcher at Hospital Sant Pau Barcelona - Spain
"First of all, I would like to thank you for your work and that of the whole team, not only for this project, but also for facilitating the dissemination of all the information available in Spanish, so that it can be accessible to everyone, it is invaluable, and the genetic services, when diagnosing the disease, should inform of your existence and the resources you offer. And for the psychological support project, not only for this disease, but to face any difficulty in life, it has been a gift."
Rosa
RosaParticipant of the Moving Forward Psychological Support Service in Spain
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