Here you will find webpage news and updates related to Huntington Disease clinical trials and studies.

– January 9th, 2024

uniQure Announces Update on AMT-130 study for the Treatment of Huntington’s Disease

The European Huntington Association, in collaboration with Roche, organized a webinar on January 9th to discuss the updates on the GENERATION HD2 clinical trial and address all the questions about why this trial is needed.

With 70 trial sites activated worldwide and over 30% of the trial enrolment, GENERATION HD2 clinical trial is on the right path. But we need to speed up to have the trial fully recruited as soon as possible to get the results. The trial aims to explore the effect on biomarkers and function in the 300 participants, all in early phases of HD and in the age between 25 and 50. 

Listen to Professor Sarah Tabrizi (UCL) and Doctor Peter McColgan (MD PhD) from Roche talking about the latest updates on GENERATION HD2 trial.

Watch the Webinar video

– November 29th, 2023

Webinar for the nordic countries: HS forskningsoppdateringer for de nordiske landene

On the 22nd of November, the European Huntington Association and the Moving Forward team, in collaboration with the Norwegian HD Association and the Swedish HD Association, organized a Webinar on HD research updates for the Nordic Countries. The webinar is in Norwegian.

There were just over 70 participants from Norway, Sweden, Denmark, and Finland.

We were joined by Astri Arnesen, Lasse Pihlstrøm and Åsa Petersen to talk about what is happening in HD research globally and what is happening specifically in Norway and Sweden.

Watch the Webinar video

– June 21st, 2023

uniQure Announces Update on AMT-130 study for the Treatment of Huntington’s Disease

The treatment tested in the AMT130 trial is well tolerated and Patients treated with AMT-130 show preserved function compared to when they started in the trial (baseline) and clinical benefits relative to the natural history of the disease. These are some of the results announced by UniQure in a press release.

In essence, this means that there are signs that the treatment works and slow down the progression of the disease. UniQure is re-encouraged by the results and plans to continue and extend the program

Read the press release here

Read the HD community letter

– June 9th, 2023

2023 Community Survey - Understanding The Needs Of Young People Impacted By HD

The ultimate goal of this survey is to learn how the HDYO can meet these needs, so that it can support, educate and empower the young people from HD families across the globe. Thus, the results of this study will provide understanding about the needs of people impacted by HD and inform the types of support provided by HDYO.

Complete the survey here

– June 9th, 2023

JOIN-HD – The Global Registry for Juvenile onset Huntington’s Disease

JOIN-HD is a worldwide registry for families affected by Juvenile onset Huntington’s Disease (JoHD), which aims to shed light on this diagnosis, bring together those impacted by JoHD, increase awareness and knowledge about this condition, facilitate research and help advocate for better care.

Learn more about the trial here

– May 12th, 2023

WEBINAR VIDEO 🟢 PROOF-HD study good and less good news

On April 25th, Prilenia announced results from the PROOF-HD clinical trial for Huntington’s Disease. Some of the participants showed significant benefits from the Pridopidine drug, while others did not benefit at all.

The European Huntington Association, in collaboration with Prilenia, organized a Webinar to talk about the preliminary study results from the phase 3 PROOF-HD study and what they mean.

Listen to Dr Michael Hayden (founder and CEO of Prilenia), Dr Ralf Reilman (Principal Investigator for PROOF-HD in Europe) and Dr. Andrew Feigin (Chair at The Huntington Study Group) explaining the results and indicating further steps. 

Watch the Webinar video here

– May 11th, 2023

There has been an amendment to the PIVOT HD trial entry criteria

We just updated the inclusion criteria for PIVOT HD, the PTC Therapeutics Phase II clinical trial. 

  • Length of trial from 12 weeks to 12 months
  • CAG repeat length was previously 42-50 and is now 40-50
  • Number of subjects was previously 162 an is now up to 252
  • We are recruiting Stage II AND Stage 3 now (so TFC and/or Independence scale less than 13/100)

Learn more about the trial here

– April 25th, 2023

Prilenia announce results from the PROOF-HD study

Prilenia announce results from the PROOF-HD study: Promising, but mixed results!
Some of the participants showed significant benefits from the Pridopidine drug, while others did not benefit at all. This is promising because, for the first time, we have a drug that demonstrates effect on disease progression, cognitive and motor symptoms.

After the announcement, the European Huntington Association organized a Webinar with Dr Michael Hayden, founder and CEO of Prilenia, who will explain the results and indicate further steps. 

– March 20th, 2023

WEBINAR VIDEO: Novartis Discusses the VIBRANT-HD Trial

The European Huntington Association, in collaboration with Novartis, organized a Webinar to learn more about VIBRANT-HD trial and the decision to stop the development of branaplam in Huntington’s Disease.

The webinar speakers included VIBRANT-HD clinical site investigator and Steering Committee member, Bernhart Landwehrmeyer, Medical lead for the branaplam program, Dr. Harry Ramos, and Clinical program head for the branaplam program, Dr. Beth Borowsky.

Watch the full webinar here

– January 19th, 2023

WEBINAR: Updates of Wave's clinical trial SELECT-HD

The European Huntington Association, in collaboration with Wave, organized a Webinar on the updates of Select-HD clinical trial for Huntington’s disease.

Dr. Ralf Reilmann, founder of the George-Huntington Institute in Muenster, presented an overview of the SELECT-HD trial, which is looking at the safety of the investigational molecule called WVE-003. After his presentation, we had a Q&A session with Danlin Xu, HD Medical Director at Wave, and Marissa Volpe, HD Program Lead at Wave.

Watch the full webinar here

– January 12th, 2023

WEBINAR: Updates from Roche on Phase II GENERATION HD2 study for Huntinton's Disease

The GENERATION HD2 clinical trial is just about to start recruiting participants in the first of a total of 15 countries and 9 of them are in Europe: Denmark, France, Germany, UK, Poland, Italy, Spain, Portugal and Switzerland. The study aims to enroll 360 participants and evaluate the safety of the investigational drug tominersen in people with early manifest HD.

Watch here the webinar video

– January 11th, 2023

EFNA's new eLearning initiative on research

The online course aims to upskill participants on how they can effectively advocate in a virtual world by identifying and engaging key stakeholders and developing partnerships, hosting successful online events and developing and disseminating key advocacy messages.

Learn more about it here

– December 16th, 2022

Updates from SOM Biotech

We met with Dr Catherine Scart, Chief Medical Officer at Som Biotech, and we asked her some questions about the new Phase 2b trial for Huntington’s Disease (HD) called SOM3355.

Watch the video here

– December 12th, 2022

We moved VIBRANT-HD to the completed trials section

Novartis ends the VIBRANT-HD study and will not continue the program with Branaplam. 

Read the EHA article and the Novartis letter here

– December 11th, 2022

Check our new Webinar section!

We have compiled all the European Huntington Association recent webinars in a new section that you can find in the menu of the webpage.

Find it here

– December 11th, 2022

We have adapted the HDTrial Finder dictionary to make it easier and more convenient by including it on the different clinical trial pages. Simply click on the highlighted words to find an easy definition.