HDClarity

Happy New Year from HDClarity team! 🎊
2025 was a fantastic year with 386 successful sampling visits—thank you to everyone who made it possible.
Here’s to even more progress in 2026!

Great connecting with fellow investigators at the HDClarity Investigator Meeting during the Clinical Research Congress in Nashville 🎶🧠

Insightful discussions, valuable collaboration, and exciting progress ahead!

📊 Presentations from the meeting are now available on the HDClarity.net website.

Big congratulations to Ramón y Cajal University Hospital in Madrid for completing their first successful sampling visit! 🎉
Want to learn more or take part in the HDClarity study? Head over to the HDClarity website for more details.

Different ways that HDClarity samples can be used in HD research:

Patients on the high-dose treatment maintained independence for longer, with biomarkers also showing less brain cell damage.

This marks a huge milestone in HD research, as this is the first time a drug trial has reported continuing, statistically significant slowing of Huntington’s progression.

Researchers announced that a one time gene therapy, AMT-130 (developed by UniQure), slowed the progression of Huntington’s Disease by ~75% over three years.

Until now, no therapy could alter its course. AMT-130, delivered directly into the brain, silences the faulty gene driving the disease.

Huntington's disease successfully treated for first time One of the most devastating diseases finally has a treatment that can slow its progression and transform lives, tearful doctors tell BBC.

A major milestone was reached yesterday in neurodegenerative medicine, advancing hope for those affected by Huntington’s disease🧵

Please visit hdclarity.net/request-samp... for more information on how to request HDClarity samples.

Sampling visits:
Since the end of June, a further 65 sampling visits have been completed, totalling 272 visits this year! This is by far our most active year yet since the study began in 2017, and we would once again like to thank our participants and dedication of all staff at our study sites.

We have now collected over 23 litres of cerebrospinal fluid (CSF)! This represents a huge number of samples available for researchers to request and study biomarkers in HD.

Exciting updates on the HDClarity study 🧵

HDClarity samples can also be used for method development, for example, validating new assays for HD biomarkers.

Any qualified investigator can request HDClarity samples for research purposes. Please visit hdclarity.net/request-samp... for more information.

Perhaps the most exciting use of HDClarity samples is their role in providing reference data for clinical trial endpoints, as well as serving as a comparison for evaluating therapeutic drug effects.

Research using HDClarity samples can also be used to understand disease progression specifically, due to the longitudinal nature of the study. Clinical measures can also be linked with biomarker data to support outcome prediction.

The samples requested by researchers can be used in many ways. The first is biomarker discovery and validation, which involves researchers identifying biomarkers involved in disease onset, progression and treatment response.

So far, over 12,000 vials of CSF, 7,000 vials of plasma and 3,000 vials of serum have been distributed to researchers around the world. These samples have been used across 36 projects, of which 9 projects are still ongoing and at various stages.

Since the study began in 2017, we have collected 76,016 vials of CSF, 64,180 vials of plasma, and 5,039 vials of serum. These samples can be requested by researchers to improve understanding of HD or to support the development of novel treatments.

The key aim of the HDClarity study is to collect high-quality cerebrospinal fluid (CSF) and blood samples over time in people with Huntington’s disease and healthy controls.

HDClarity samples: storage, distribution and utility 🧵

We would like to thank this site and their participants for their ongoing dedication to the HDClarity study and wider Huntington's disease research.

For more information on North York General Hospital, please visit www.nygh.on.ca/care-service...

"We work hard to make the research process as smooth and accommodating as possible. We truly value the time and dedication each person brings, and we believe that this mutual respect and connection have been key to our success in recruitment and visit completions".

Comments from the research team (continued):

"This gives us the chance to meet with individuals and families who are already passionate about contributing to research. We focus on building strong, trusting relationships with both participants and their caregivers".

Comments from the research team:

"At the North York General site, we’re proud to have a strong and active engagement with the Huntington’s Disease (HD) community! Most of our research participants are referred through our multidisciplinary HD clinic and the Enroll-HD study".

Recruitment success in HDClarity at the North York General Hospital:

This site have completed 19 sampling visits so far in 2025, making them one of the top 5 most active sites in our study!

HDClarity sites:

As mentioned previously, HDClarity is a worldwide, multi-site study. Most sites are located in Europe and North America. Another site that is currently excelling is North York General Hospital in Canada.

Meet the team and recruitment success- HDClarity North York General Hospital site 🧵

Left to right: Clare Gibbons – Research Manager, Dr. Phillippe Rizek – Neurologist and PI, Rebecca Searles – Research Coordinator

For more information on Hospital de la Santa Creu i Sant Pau work, visit
www.santpau.cat/en/web/publi... and for more information on study sites, visit enroll-hd.org/find-an-enro...

This site have completed 22 Sampling Visits already this year, and we would like to thank everyone involved for their commitment to Huntington's disease research!

#HuntingtonsResearch #SantPau #HDClarity

What drives recruitment and smooth sampling visits in HDClarity. A message from this sites study coordinator:

For us, it comes down to two things: highly engaged participants who truly believe in advancing science🧠💪 and a multidisciplinary team that’s approachable, committed, and always available🤝

Hospital de la Santa Creu i Sant Pau site:

This sites success is down to the dedicated team comprised of study coordinators, principal investigators, clinicians, nurses and lab staff.