Category: Trial Updates

Update on GENERATION HD1 study

The enrolment in the Phase III GENERATION HD1 study has been increased from 660 to 801 participants worldwide.This change does not impact participants already enrolled in the study, but it allows for additional patients to enrol in the three existing study groups. By enrolling more participants, Roche and Genentech will receive more data and increase…
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New huntingtin lowering treatment?

There are currently many pharmaceutical companies working on huntingtin lowering drugs. A new study from Sangamo Therapeutics and CHDI foundation might show a promising new huntingtin lowering tool.  There is a lot of Huntington’s disease research going on at the moment. Among other things, PTC Therapeutics is working on a pill – a small molecule…
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Latest Huntington News!

The EHDN Newsletter is here! Get updated on ongoing trials and Enroll-HD, read about Rob’s first meeting with the Huntington community and the situation for Huntington families in Venezuela. CONTENT Page 2 The Huntington’s disease minipig, Adela, is 10 Page 3 Giving families a place, a face and a voice Page 4 Update: Clinical trials…
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Video – Latest research news!

The video from CHDI’s therapeutics conference is here! This year, the conference was bigger and more exciting than ever. Learn more about the latest research and treatment. Watch the video below! The conference is the biggest annual gathering of Huntington’s disease researchers. At the 14th Therapeutics Conference, 360 researchers participated. During the gathering in Palm…
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EHDN News March

The European Huntington’s Disease Network (EHDN) has launched their March Newsletter. Find it here! In the March edition you can learn more about the Fellowship exchange programme and how you can apply.  Read about The Unwanted Inheritance – a documentary about a Huntington nursing home in Belgium – and get updated on clinical trials, Enroll-HD and research.…
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New Study Announced Today

Today Roche announced that the first patient has entered the GENERATION HD1 study. A trial that will investigate the efficacy and safety of the huntingtin lowering drug RG6042 – formerly known as IONIS-HTTRx. Over the last couple of years, the safety of the drug and short term effects, have been measured in 46 participants. Now…
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Two important meetings in Vienna

From 13thto 16thof September, to important meetings took place in Vienna: the EHA Business Meeting and the EHDN Plenary Meeting. During the weekend EHA’s board was re-elected and over 1000 participants got updated on the latest Huntington research. Pictures below! The European Huntington Association’s Business Meeting took place at the Austria Center Vienna. Around 70…
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Accelerated evaluation of drug

The European Medicines Agency has acknowledged the huntingtin lowering drug, RG6042 (previously known as IONIS-HTTRx), as a possible therapy that may significantly improve patients’ quality of life and granted Priority Medicine designation. Read more: GROUNDBREAKING RESULTS! In other words, with the “PRIME” (PRIority MEdicine) designation, the European Medicines Agency will assist the pharmaceutical company in making…
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News from EHDN

Read about the Registery journey from the very beginning to the more recent successor study Enroll-HD. Cristina Ferreira gives you an insider’s view of her personal experiences with Regisery in an inspiring interview- definitely worth a read so don’t miss out on this interesting newsletter.   [pdf-embedder url=”http://eurohuntington.org/wp-content/uploads/2018/07/EHDN-News-July2018.pdf”]

A letter from Roche

Roche Pharmaceuticals is currently working on their Huntingtin Lowering drug, RG6042 (formerly known as IONIS-HTTRx). In the letter Patient Partnership Director, Mai-Lise Nguyen, write about the company and their philosophy on working with the HD patient community. On behalf of the Roche HD team Nguyen writes: – Since taking over development of RG6042 from Ionis…
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