HDClarity

Recruitment update! 🧪 As of April this year, 134 HDClarity sampling visits have taken place. That’s around 2.68L of CSF collected! How many more visits do you think will happen before the end of the year?

9 Jan

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!

17 Dec 2025

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.

26 Nov 2025

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.

15 Oct 2025

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

eur01.safelinks.protection.outlook.comHuntington's disease successfully treated for first timeOne of the most devastating diseases finally has a treatment that can slow its progression and transform lives, tearful doctors tell BBC.

25 Sept 2025

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

25 Sept 2025

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.

25 Sept 2025

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.

Exciting updates on the HDClarity study 🧵

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.

hdclarity.netRequest samples – HDClarity

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

Exciting updates on the HDClarity study 🧵

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.

HDClarity samples: storage, distribution and utility 🧵

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.

hdclarity.netRequest samples – HDClarity

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.

HDClarity samples: storage, distribution and utility 🧵

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.

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.

HDClarity samples: storage, distribution and utility 🧵

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.

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.

HDClarity samples: storage, distribution and utility 🧵

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.

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

"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".

eur01.safelinks.protection.outlook.comClinical ServicesOfferings include genetic counselling, assessment and diagnosis to a wide range of patients who meet with a genetic counsellor and/or clinical geneticist.

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...

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".

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".

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.

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!

Meet the team- HDClarity Hospital de la Santa Creu i Sant Pau site 🧵

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

santpau.catFunctional Unit of Minority Diseases with Movement Disorders

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...

Meet the team- HDClarity Hospital de la Santa Creu i Sant Pau site 🧵

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.

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🤝

Meet the team- HDClarity Hospital de la Santa Creu i Sant Pau site 🧵

HDClarity sites: HDClarity is a worldwide, multi-site study, with most sites located in Europe and North America. One site that is currently excelling is the Hospital de la Santa Creu i Sant Pau site in Barcelona, Spain.

CSF quality – what is it, why does it matter, how do we ensure it, and how it is checked? 🧵 #Huntingtonsdisease #HDClarity

The relevance of HDClarity samples to wider Huntington's disease research: Research requires reliable and reproducible data; poor-quality CSF can introduce confounding variables or degrade target molecules (Huntingtin, NFL).

hdclarity.nethdclarity.net

Therefore, CSF quality checks are essential to ensure the validity of experimental results and the comparability of datasets across studies, and also for the reliability for clinical trials. For more information on our CSF collection and processing procedures, visit hdclarity.net/wp-content/u...

CSF quality – what is it, why does it matter, how do we ensure it, and how it is checked? 🧵 #Huntingtonsdisease #HDClarity

How is CSF quality checked? A triplicate cell count is performed on a small volume of the total sample to check for the presence of red or white blood cells which can indicate, if high enough, a poor-quality CSF sample.

Why do we check for these cells? It is important to check for the presence of red blood cells, as these cells can interfere if high enough, with protein or biomarker analysis. White blood cells indicate signs of infection, which can also skew results.

CSF quality – what is it, why does it matter, how do we ensure it, and how it is checked? 🧵 #Huntingtonsdisease #HDClarity

Why is CSF quality particularly important in the HDClarity study? Collecting high quality samples in the study is crucial as research using our samples has been used to develop assays for clinical trials in Huntington's disease.

How do we ensure high CSF quality: We use standardized collection methods, for example, a lumbar puncture using atraumatic needles, have very strict rules for processing times, and ensure the samples are stored at the correct temperature.

CSF quality – what is it, why does it matter, how do we ensure it, and how it is checked? 🧵 #Huntingtonsdisease #HDClarity

Why does the quality of CSF matter? The quality of CSF is crucial because samples which are of poor quality can lead to inaccurate diagnostic results or misleading research findings.

CSF quality in the context of research: In research, particularly in neurodegenerative diseases or biomarker discovery, even small contaminants (e.g., blood or protein degradation) can skew data and invalidate results.

CSF quality – what is it, why does it matter, how do we ensure it, and how it is checked? 🧵 #Huntingtonsdisease #HDClarity

What does CSF quality refer to? Cerebrospinal fluid (CSF) quality refers to the condition and integrity of CSF samples. This includes their physical, chemical, and cellular characteristics, as well as absence of contamination or degradation.