Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers. […]
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Latest News
PTC Therapeutics PIVOT-HD study endorsed* by EHDN
Study aims and goal: The primary goal of this study is to evaluate the safety and pharmacodynamic effects of PTC518 and placebo in participants with HD. No. of study participants and sites: This phase IIa study aims to recruit participants from sites in Australia, France, Germany, Netherlands, the UK and the US. For further information […]
FELLOWSHIP NOW OPEN FOR APPLICATIONS
Fellowship Exchange Programme in Huntington’s Disease is now open for applications. Are you a young/recently qualified clinician interested in learning more about HD? […]
EHDN Newsletter – 47th edition
The EHDN newsletter (archive) aims to communicate the network’s activities and other developments of interest in the field of Huntington’s disease to the lay community, healthcare professionals and scientists. It appears three times a year (March 1, July 1, Nov 1). To receive EHDN news going forward, please subscribe to the EHDN news at the […]
Sage Therapeutics DIMENSION-HD study endorsed* by EHDN
Study aims and goal: The primary purpose of this study is to evaluate the effect of SAGE-718 on cognitive performance and functioning in participants with HD. No. of study participants and sites: This phase II study aims to recruit participants from approximately 50 sites in Australia, Europe and North America. For further information see the […]
Sage Therapeutics SURVEYOR-HD study endorsed* by EHDN
Study aims and goal: The primary purpose of this study is to assess the magnitude of the baseline difference between participants with early Huntington’s Disease (HD) and healthy participants (HP) with respect to measures of cognitive performance and the effect of SAGE-718 on cognitive performance and functioning in participants with HD. No. of study participants […]
SOM Innovation Biotech European Study endorsed* by EHDN
Study aims and goal: Phase IIb, randomized, double-blind, placebo-controlled study in parallel groups assessing the efficacy and safety of two doses of SOM3355 in patients suffering from Huntington’s Disease with choreic movements. No. of study participants and sites: This Phase IIb study aims to recruit participants from 22 sites in France, Germany, Italy, Poland, Spain, […]
Joint working Genetic Modifiers Working Group, Genetic Counseling & Testing Working Group and Incidental Findings Task Force meeting
Meeting notice: Joint working Genetic Modifiers Working Group, Genetic Counseling & Testing Working Group and Incidental Findings Task Force meeting Thursday 15th September 2022, 13.00 – 17.00 Location: room Magenta B, Bologna Congressi S.r.l (if you would like information about joining remotely please let us know) Application of genetic modifier of Huntington’s disease data in […]
EHDN statement on the pausing of dosing in the endorsed clinical trials VIBRANT and AMT-130
/pausing-endorsed-clinical-trials/ […]
Prof. Lesley Jones – In Memoriam
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