iiinova — where your digital self keeps evolving

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

Request samples – HDClarity

000

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.

100

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.

100

Exciting updates on the HDClarity study 🧵

100

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.

Request samples – HDClarity

000

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.

100

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.

100

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.

100

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.

100

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.

100

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.

100

HDClarity samples: storage, distribution and utility 🧵

100

eur01.safelinks.protection.outlook.com

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...

Clinical Services

Offerings include genetic counselling, assessment and diagnosis to a wide range of patients who meet with a genetic counsellor and/or clinical geneticist.

000

"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".

100

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".

100

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".

100

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!

100

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.

100

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

110

Functional 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...

santpau.cat

000

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

101

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🤝

100

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.

100

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.

100

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

110

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...

000

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).

100

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.

100

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.

100

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.

100

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.

100

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.

100

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.

100

What is high quality CSF? High-quality CSF is clear, colourless, and free from blood, microbial contamination, and cellular breakdown, making it suitable for diagnostic and research purposes.

100

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.

100

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

110

Summary of Repeat Visits in HDClarity: In short, the repeat sampling helps researchers look at the stability of biomarkers associated with the disease over a short period of time. For further information, visit hdclarity.net/study-inform... to view our study protocol.

Study Information – HDClarity

000

So why is a Repeat Sampling Visit useful? Scientists can see better how certain markers or changes in the fluid develop as the disease progresses. It also helps them understand how quickly Huntington’s disease affects the brain and how different people may experience the disease differently.

100

Repeat Sampling Visit continued: The aim of this visit is to get an additional cerebrospinal fluid sample, which is the clear liquid that surrounds the brain and spinal cord. The fluid is collected through a procedure called a lumbar puncture, sometimes called a spinal tap.

100

Repeat Sampling in HDClarity: This simply means that researchers collect samples from the same person more than once over a small period of time. This visit is optional and only offered in the first year of participation. This visit must take place within 1-2 months from the baseline Y0 visit.

100

Structure of the study: The study completes annual visits, where each year, a screening and sampling visit is conducted enabling CSF samples to be collected. But, one of the key parts of this study is something called "repeat sampling."

100