Cracking the Case: How a Smartphone “Detective” is Helping Track Huntington’s Disease Progression

team of researchers from Roche and University College London (UCL) have developed a new clinical measure called the Huntington’s Disease Digital Motor Score (HDDMS). This score compiles data collected remotely using smartphones, to track certain signs and symptoms of Huntington’s disease (HD). This new technology helps collect rich datasets and could help reduce the number of people needed to power clinical studies. Let’s get into what the team did and what this means for the HD community. 

Gathering clues about the early signs of HD

Trying to spot some of the subtle early signs of HD, or how symptoms progress over time can be a lot of detective work from HD clinicians and scientists. Especially since HD can affect each person differently, the clues are not always big and obvious. Instead, symptoms and the way they change can be like tracking down lots of smaller clues and hints that need to be pieced together to help figure out what is really happening for a given person. 

For scientists and doctors studying HD, monitoring the subtle changes in symptoms of the disease is often like this type of detective work. One of the most characteristic groups of symptoms in HD is changes to movement, which can be impacted in many ways. This includes balance, walking, involuntary jerking motions, and how fast people with HD can tap their fingers. 

Each symptom is a clue about how the disease is progressing, which is important to understand in detail, so we can better measure the precise changes which come as HD progresses, and how they might differ between people. With many exciting clinical trials underway or in the pipeline, we are keen to see if these new experimental therapies can slow down or halt these symptoms, especially the earlier and more subtle features of disease. 

But catching these clues early and accurately has been a huge challenge. Traditional clinic visits for people with HD to see their neurologist only give snapshots in time. This means that subtle changes can go unnoticed until later stages, slowing down research and making it harder to tell if new treatments are really working.

A Digital Detective: The HD Digital Motor Score (HDDMS)

To help solve these problems, a team of researchers from UCL and Roche have developed a new kind of detective tool called the HDDMS. This is a score created from simple movement tests and measurements that can be recorded by anyone with HD via their smartphone, wherever they are. 

The measurements collected are part of the HD digital monitoring platform. Just like a detective gathering evidence, participants complete a series of quick motor tests using a smartphone app. These help to measure:

• Standing balance
• Finger tapping speed
• Walking patterns
• Involuntary movements (sometimes called chorea)

The app collects a lot of data as people go about their everyday lives. This means that data can also be collected more frequently than traditional data collection processes, where the person would have to go in to see their neurologist for each test. From all of these tests, the HDDMS combines lots of subtle movement clues into a single score that reflects how well motor function is holding up in people with HD, and how this is changing over time.

A lower score means better motor control; less clues for HD symptoms are found and the detective’s case is still cold. On the other hand, a higher score means more progression, and the clues show the disease is progressing.

Why This New Digital Detective Is a Game-Changer

The researchers tested this digital detective tool using data from over 1,000 people with HD, collected across four different studies. That’s a lot of data! 

Here’s what they found:

More sensitive than traditional tools: The HDDMS was about twice as sensitive in detecting real changes in motor symptoms compared to the commonly used clinical score, the composite unified Huntington’s disease rating scale, or cUHDRS. This means that scientists are able to pick up on clues earlier and more clearly than before.

Reliable and consistent: The score is very consistent when repeatedly calculated, just as a good detective would never miss the same clue twice.

Speeds up clinical trials: Because the HDDMS detects changes faster, it could help researchers run smaller and shorter clinical trials. This means testing new drugs might take less time and involve fewer people, speeding up the hunt for effective treatments.

Convenient and remote: People can complete the tests at home in just five minutes and may no longer need to travel to a clinic for long assessments. It’s like having a detective’s magnifying glass in your pocket, ready to spot clues anytime. This is especially great for people with HD who live in remote areas, very far from their neurologist, or have mobility issues. 

Professor Ed Wild from UCL, one of the lead scientists on this project, explains:

“Our findings suggest that incorporating the HDDMS in clinical trials will help to give clearer answers about whether a potential treatment is working, with fewer participants or shorter lead times than conventional measures…. HDDMS is evaluated in a five-minute assessment in people’s homes, [making] it convenient and potentially more meaningful than in-clinic measures of motor impairment.”

The Bigger Picture: Why Tracking Movement Matters

Movement problems are one of the most visible aspects of HD. They affect daily life, making walking, balance, and fine motor skills harder as the disease progresses.

By accurately tracking these changes, scientists get critical clues about how HD unfolds in each person with more precise timepoints through the process. This helps not only in testing new therapies but also in understanding the disease better.

This is a bit like a detective catching a villain earlier in a mystery, before they cause more havoc. The HDDMS gives doctors and researchers a sharper magnifying glass to track the disease’s subtle moves, allowing for faster intervention and better support.

The Road Ahead for the HDDMS

Of course, no detective tool is perfect. The HDDMS has mostly been tested in people who already show symptoms of HD, and more work is needed to see how well it works in very early or more advanced stages of the disease.

Also, while it detects changes quickly, researchers are still learning how well it predicts long-term outcomes, just like how a detective’s case might unfold over years.

Still, the potential is huge! As smartphone and wearable technologies improve, these digital tools could become standard detectives in monitoring not just HD, but other neurological diseases.

Spotlight on Hope

This new digital motor score is a beacon of hope in the HD research world. By turning everyday devices into powerful detective tools, it promises to accelerate research, reduce patient burden, and help uncover the hidden clues of HD progression. All of this brings us closer to effective treatments and better lives for everyone affected.

So next time you pick up your phone, remember, it might just be the detective helping to solve one of medicine’s toughest mysteries.

TL;DR

• HD Digital Motor Score (HDDMS) is a new smartphone-based tool to track HD motor symptoms remotely.
• It uses simple tests (balance, tapping, walking) via an app accessed at home, which is quick to complete.
• The HDDMS is twice as sensitive as traditional measures, like cUHDRS.
• This means smaller trials could be possible with richer datasets.
• The HDDMS has been tested and validated on data from 1,000+ people across 4 studies.
• It could become a standard tool for HD and other brain diseases, helping bring treatments faster, with less burden for patients.

Learn more

Full article: “A digital motor score for sensitive detection of progression in Huntington’s disease” (open access).