iiinova — where your digital self keeps evolving

HDClarity @hdclaritystudy.bsky.social · 17/12/2025

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.

001

HDClarity @hdclaritystudy.bsky.social · 15/10/2025

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

000

HDClarity @hdclaritystudy.bsky.social · 12/09/2025

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

HDClarity @hdclaritystudy.bsky.social · 28/08/2025

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

HDClarity @hdclaritystudy.bsky.social · 19/08/2025

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 @hdclaritystudy.bsky.social · 30/07/2025

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

HDClarity @hdclaritystudy.bsky.social · 16/07/2025

2025 versus 2024: Compared to 2024, where in the first 6 months 123 visits were completed, an additional 84 visits were performed in the first 6 months of 2025. This demonstrates a huge recruitment milestone for our study.

100

HDClarity @hdclaritystudy.bsky.social · 09/07/2025

Another promising drug candidate for HD is Roche’s Tominersen, being evaluated in the GENERATION HD2 study. This is a phase-2 clinical trial which is exploring whether lowering levels of the huntingtin protein can slow or stop the progression of HD symptoms.

100

HDClarity @hdclaritystudy.bsky.social · 09/07/2025

What is AMT-130? AMT-130 is a gene therapy, with the aim of stopping the production of the mutant huntingtin protein (mHTT). A very thin tube, called a micro catheter, is used to deliver micro-RNA to the brain to selectively ‘knockdown’ the huntingtin gene.

100

HDClarity @hdclaritystudy.bsky.social · 18/06/2025

Other common side effects from having a lumbar puncture… Another risk associated with the procedure is lower back pain, but with light activities following the procedure and the type of needle we use, the risk of this event is very low and any discomfort is generally mild.

100

HDClarity @hdclaritystudy.bsky.social · 18/06/2025

The most common LP risk? The most common risk associated with the procedure is post LP headaches. These can arise if the procedure causes the pressure inside the head to become too low. Fortunately, this is relatively rare, and when it does happen, it usually resolves without any extra intervention.

100

HDClarity @hdclaritystudy.bsky.social · 11/06/2025

Lumbar puncture continued: Then we insert a very fine needle into the lower back to reach the space where the CSF is. A syringe is then used to remove the CSF.

100

HDClarity @hdclaritystudy.bsky.social · 11/06/2025

Structure of HDClarity: Each year, participants undergo “screening” and “sampling” at the study site. Each of these is referred to as a “visit”. They may be separate, or back-to-back on two consecutive days. There is about a year between annual sampling visits.

100

HDClarity @hdclaritystudy.bsky.social · 04/06/2025

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.

112

HDClarity @hdclaritystudy.bsky.social · 22/05/2025

The HDClarity collection is the largest set of CSF and blood samples ever assembled in HD and it’s growing fast, providing uniquely valuable samples and data to dozens of HD research programs across the globe!

100

HDClarity @hdclaritystudy.bsky.social · 22/05/2025

How do we collect CSF? We collect CSF using a procedure called a lumbar puncture or spinal tap – more about this in detail in future updates.

100

HDClarity @hdclaritystudy.bsky.social · 15/05/2025

Longitudinal visits and why they are important: HDClarity is a longitudinal study, meaning that participants are invited to return for multiple sampling visits, usually about a year apart. Longitudinal sampling lets us follow how HD changes the brain and body over time.

100

HDClarity @hdclaritystudy.bsky.social · 07/05/2025

Where is HDClarity operating? There are currently 36 sites worldwide that are actively recruiting for the study across Europe, North America, Latin America and Australasia. Our most active sites are currently operating in the United Kingdom and Germany.

100

HDClarity @hdclaritystudy.bsky.social · 07/05/2025

What is HDClarity?🧵 HDClarity is a longitudinal open-ended observational study. The main objective of the study is to collect high-quality cerebrospinal fluid samples for longitudinal evaluation of biomarkers and pathways which will enable the development of novel treatments for #HuntingtonsDisease

131

HDClarity @hdclaritystudy.bsky.social · 07/05/2025

100

HDClarity @hdclaritystudy.bsky.social · 07/05/2025

100