In this section, we have compiled dependable and up-to-date written and audio information about past, ongoing and future HD clinical trials and studies. You will also find didactic contents about the basics of clinical trials and drug discovery pipeline.
We believe that the more knowledgeable you are about the research process, the more proactive you will be in the collective effort to find effective disease-modifying treatments for HD.
HD TrialFinder
HDTrialFinder is developed by the European Huntington Association (EHA). HDTrialFinder is the first and only European platform where all Huntington’s disease trials and studies are presented in plain language.
Here you will find information about clinical trials, a map to localizate facilities all over Europe and information about how to participate in research.
PubMed
PubMed is one of the most comprehensive scientific databases, comprising more than 33 million citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full text content from PubMed Central and publisher web sites.
Here you will find an extensive and updated list of scientific articles and other publications on a wide range of topics about Huntington’s disease. PubMed works as a search engine where you can currently find more than 33.000 entries related to research in Huntington’s disease. You can refine your search using various features, such as language, author’s name, publication date, article type, and many others.
Orphanet - The portal for rare diseases and orphan drugs
Orphanet is a unique resource, gathering and improving knowledge on rare diseases. It aims to provide high-quality information on rare diseases, increase the visibility of rare diseases and ensure equal access to knowledge for all stakeholders. Orphanet was established in France by the French National Institute for Health and Medical Research in 1997. This initiative became a European endeavour from 2000, supported by grants from the European Commission: Orphanet has gradually grown to a Consortium of 40 countries, within Europe and across the globe.
Here you will find multilingual relevant information about the classification of HD and other rare diseases, an inventory of orphan drugs, a directory of patient organizations, a directory of professionals and institutions related to HD, a directory of expert centres, a directory of medical laboratories providing diagnostic tests, a directory of ongoing research projects, clinical trials, registries and biobanks, and a collection of reports and news about HD and other rare diseases.
EUPATI - The European Patients’ Academy on Therapeutic Innovation
The European Patients’ Academy on Therapeutic Innovation (EUPATI) is a public-private partnership composed of a multi-stakeholder structure representing patient organisations, not-for-profit, pharmaceutical industry and academic institutions. It aims to empower patient experts and advocates to work effectively with the relevant authorities, healthcare professionals and industry to influence the medicines development process for the benefit of patients.
Here you will find accessible, well-structured, comprehensive, scientifically reliable and user-friendly educational materials for patients on the process of medicines research and development.
HDBuzz
HDBuzz is an online resource providing Huntington’s disease research news. It’s written in plain language by scientists for the global HD community
Here you will find the latest global news about clinical trials, statistics, FAQ and other HD resources.
Huntington Study Group (HSG)
HSG is the world’s first HD cooperative therapeutic research organization. Today, HSG is a world leader in facilitating high quality clinical research trials and studies that bring us closer to finding more effective treatments for HD and reducing the burden of HD for families affected by the disease.
Here you will find information about clinical trials and research, educational videos and learning about living with HD, quiz and other resources.
Huntington’s Western Australia
Huntington’s WA was formed specifically to improve the quality of life for people with Huntington’s Disease, their families and carers in Western Australia. The Association is dedicated to providing individual advocacy, support and education for the Huntington’s community.
Here you will find information about research, Parenting Resources Pack, FAQ, event and news, advocacy and how you can get involved, etc.
CHDI Foundation
CHDI Foundation is a privately-funded, not-for-profit biomedical research organization devoted to a single disease – Huntington’s disease. Their mission is to develop drugs that will slow the progression of Huntington’s disease and provide meaningful clinical benefit to patients as quickly as possible.
Here you will find information about preclinical research, scientific publications, mutimedia and news, etc.
European Huntington's Disease Network
The EHDN is a nonprofit research network committed to advancing research, facilitating the conduct of clinical trials, and improving clinical care in HD.
Here you will find information about HD history, symptoms and disease progression, diagnosis and treatment, HD inheritance and HD causes, and HD in daily life.
Last update: 02/04/2022
Huntington’s Disease Youth Organization (HDYO)
The Huntington’s Disease Youth Organization is a non-profit organization set up to provide support and education to young people (aged up to 35) impacted by Huntington’s disease around the world.
Here you will find information about HD history, research and JOIN-HD, news and events, multimedia and blogs, local support, etc.
Huntington’s Disease News
Huntington’s Disease News is a site strictly for news and information about the disease. It does not provide medical advice, diagnosis or treatment.
Here you will find information about diagnosis, stages and living with HD, treatment, global news, etc.
Huntington's Outreach Project for Education at Stanford
HOPES is a student-run project at Stanford University, California, dedicated to making scientific information about Huntington’s disease (HD) more readily accessible to patients and the public.
Here you will find information about the science of HD, research, diet and lifestyle in HD patients, conferences and podcasts, etc.
Huntington’s Disease Society of America
HDSA is the premier nonprofit organization based in North America dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families.
Here you will find information about the science of HD, research and healthcare professional resources, advocacy and how you can get involved, etc.
Fondazione LIRH
LIRH is a Foundation based in Italy which strives to ensure that patients with Huntington’s Disease, people at risk and their families have access to appropriate and innovative therapies, receive adequate clinical and psychological care and live their conditions without being subject to prejudice or discrimination.
Here you will find information about the history of HD, clinical trials and research, awareness and how you can get involved, news and multimedia, etc.