Prof Ed Wild

Galaxy C30 in September 2024 (top) and last night (bottom). A star exploded 40m years ago and its light reached earth 2 weeks ago as supernova SN2025rbs. Taken by me from Bethnal Green #astrophotography #astronomy

It is to be hoped (but, based on past experiences, not expected) that this decision will be a cause for reflection on the best way for the HD community to muster & focus its resources. Plenty of drugs designed for HD & targeting central disease mechanisms need testing now and soon. Time to move on!

This will be disappointing to many, but it’s the right decision. Regulators consider data. After 6 negative trials it’s time to admit the data don’t support pridopidine as a symptomatic (2006-2015) or disease-modifying (2015-2025) treatment for #HuntingtonsDisease

www.dutchnews.nl/businesswire...

Evaluating finger-prick blood collection for remote quantification of neurofilament light in neurological diseases - Journal of Neurology Promising blood-based biomarkers of neuropathology have emerged with potential for therapeutic development and disease monitoring. However, these tools will require specialist tertiary services for in...

New paper from the @hob-lab.bsky.social just published in Journal of Neurology. A step toward more accessible biomarker testing 🩸 link.springer.com/article/10.1... @drl-bo.bsky.social @uclbrainscience.bsky.social @uclqsion.bsky.social

Important paper on accessible biomarkers from @hob-lab.bsky.social. Well done Annabelle Coleman @drl-bo.bsky.social and all.

Sloe news day

@goodlawproject.org please could you follow me so I can DM?

Where else are we planning to open HDClarity sites?

We are currently in the process of opening recruitment to the study into other countries, including Melbourne, Australia, and Lisbon, Portugal.

How does HDClarity work - and what is a lumbar puncture? 🧵 #Huntingtonsdisease #HDClarity

💬 UCL Huntington’s Disease Centre's @profwild.bsky.social said: “More sensitive tools to measure disease progression are particularly valuable in rare diseases like Huntington’s disease."
Access the research here: buff.ly/hCk99kS

Smartphone tests could accelerate drug development for Huntington’s disease A series of digital tests, carried out via a smartphone app, could enhance the detection of disease progression in Huntington’s disease and improve the efficiency of clinical trials, finds research le...

A series of digital tests carried out via a smartphone app could enhance the detection of disease progression in #HuntingtonsDisease and improve the efficiency of clinical trials, finds research led by scientists at @uclqsion.bsky.social @ucl-hd.bsky.social and Roche including @profwild.bsky.social

A digital motor score for sensitive detection of progression in Huntington’s disease Giboin et al. introduce a new motor score that can be used to monitor Huntington’s disease progression. Co-designed by people with Huntington’s disease and

New paper in BRAIN from Team Wild and Roche: A digital motor score for sensitive detection of progression in Huntington’s disease (open access)

doi.org/10.1093/brai...

Exciting news regarding new study sites for the HDClarity study 🧵 #HuntingtonsDisease

I can’t believe there
are people who allow
PowerPoint to
choose where the line
breaks go in their
slide titles

Excitement and Anticipation as PTC’s Huntington’s Disease Drug Clears a Major Hurdle to Sprint Home

https://en.hdbuzz.net/433

My thoughts on the @ptcbio.bsky.social Pivot-HD top line results #HuntingtonsDisease #votoplam ir.ptcbio.com/static-files...

Check out the March 2025 edition of the #HD Clinical Trials Update, now available online in the Journal of Huntington's Disease @profwild.bsky.social 🔓 Open access link: journals.sagepub.com/doi/10.1177/... @ucl-hd.bsky.social @uclbrainscience.bsky.social @uclqsion.bsky.social

April 2025: This Month in Huntington’s Disease Research HDBuzz has ramped up to match the accelerating pace of Huntington’s disease research. April 2025 brought us insight on somatic expansion, replacing lost brain cells, and clinical trial updates. Read o...

en.hdbuzz.net/430

April 2025: This Month in Huntington’s Disease Research

https://en.hdbuzz.net/430

Congratulations to Richard Ayoade for getting the Pope’s funeral English translation gig. An unexpected choice and an invigorating one

@movedisorder.bsky.social I have written a memoir that should be on interest to the MDS members. To be published May 31 by Cambridge University Press and also on Amazon:

Roche provides an update on tominersen: What’s next for this huntingtin-lowering drug? Roche gave an update this week about GENERATION HD2, testing the HTT-lowering drug tominersen in people with HD. The trial is continuing, but only the higher dose will move forward. What does this upd...

en.hdbuzz.net/427

Roche provides an update on tominersen: What’s next for this huntingtin-lowering drug?

https://en.hdbuzz.net/427

It's Good News Thursday!

UniQure has been granted Breakthrough Therapy designation for AMT-130. Development and review will be expedited. Woohoo!

It's given to drugs that could treat a serious condition and have prelim clinical support for solid improvement on clinically significant endpoints.

It does have that Japanese horror vibe doesn’t it. My 7 day countdown is underway

Unhelpfully helpful Outlook

Found in my contacts: no idea who she is, why she’s evil or when I encountered her. No phone number or any other info

Please follow @hdclaritystudy.bsky.social - my #HuntingtonsDisease multi-site, international cerebrospinal fluid biobank study!

Over 1,000 exceptionally high quality CSF samples in the freezer, with granular phenotypic metadata

💙

The words nail and head spring to mind 😔

We had a virtual sit-down with HDBuzz founder, editor emeritus, Huntington’s disease researcher, and neurologist Prof Ed Wild. We laughed, we cried… actually we just laughed. But we also talked about HD research, the positive news from 2024, and Ed’s outlook for 2025. Spoiler alert: it’s hopeful!