Crowdsourced voice recordings: towards a disruptive technology for Parkinson's disease

Many of us know someone who has Parkinson's -- it affects more than 6 million worldwide -- and would love to play an active role in research into treatments. That's my situation: my friend Jan Stripling (left), who used to be a virtuoso ballet dancer, was recently diagnosed with Parkinson's. For someone whose entire existence revolved around the joy of high precision, coordinated movement that took a sizable fraction of his lifetime to perfect, this incurable disease, that replaces voluntary movement with tremor, rigidity and weakness, is cruel.

As a scientist, I'm fortunate to perhaps be in a position to help. But here I want to argue that anyone can help! Although there are no known biomarkers, research by me (and others) shows that with voice recordings alone, we can quantify symptoms of the disease (e.g. reproduce symptom measurement on the standard clinical scale with around 2% error), and also detect when someone has the disease (with around 99% accuracy). To adapt this technology to the standard phone network will require 10,000 voice recordings from healthy controls and people with Parkinson's.

Last month, we launched the Parkinson's Voice Initiative (PVI) to crowdsource these 10,000 calls. The response has been truly amazing -- nearly 5,000 people have contributed -- we are overwhelmed! It seems: if you provide a simple, quick (around 3 minute), anonymous, and painless way to contribute to scientific research, people will happily participate. And that gives me tremendous hope for the future of medical science.

If the PVI reaches its goals, the technology we can build with those recordings could mean several big advances for Parkinson's, including reducing the need to visit the clinic for symptom checkups. But perhaps more revolutionary is the impact this could have on the search for new treatments. One of the major stumbling blocks on the road to new drugs is the cost and inconvenience of recruiting large numbers of subjects to get sufficient statistical power in the results. If the only action needed to follow the progress of subjects is a low-cost, 3-minute phone call, then we can run clinical trials on a truly massive scale (think: millions of subjects for overwhelmingly definitive scientific conclusions).

And finally, there's tantalizing, but so far weak, evidence that voice disturbances may be an early disease symptom, present long before the tell-tale limb tremors of Parkinson's. If this is true, voice could become an "acoustic biomarker" of the disease. Why is this so important? By the time the tremors of Parkinson's lead to clinical diagnosis, the neuronal damage is usually beyond repair. So, the phone could become a radically cheap way to screen for the early symptoms, in the general population. We could then work out who might best participate in trials for potential cures, rather than trials for drugs that just suppress the symptoms temporarily. While this "voice as early biomarker" hypothesis is a long shot, we now have the means to test it and think it's too great an opportunity not to pursue.

Parkinson's Voice Initiative

• [AquaDad18]

  My Dad got diagnosed with Parkinson’s a few years ago.  I was amazed to find out that there wasn’t really any way to test for it.

  I’m definitely going to do the call.  Thank you so much for this info.

• [picaflor]

   This is awesome. I’ll call later from home.

  • [picaflor]

     Done! So simple. Best of luck with your research!

• [apoxia]

  I did my PhD at the Van der Veer Institute for Parkinson’s and Brain Research (now the New Zealand Brain Research Institute) where researchers were also looking for biomarkers. They were focused on voluntary eye movements. I understand how difficult this kind of research is. My own research focused on people with Alzheimer’s dementia, another disease with no biomarkers for diagnosis. I wish you well with your research.

• [katkins]

  (Hi Max):

  Just before the “gait as an early indicator of dementia” news last week, I was thinking a similar thing about Parkinsons (and related) — that all those fancy footwear stores that have the sophisticated gait sensors could (if privacy regulations and medical ethics issues can be handled) become very early detectors of Parkinsons and dementia…

• [Cakey McDoodle]

  Done and done. The article wasn’t clear, but after the jump you can see the countries involved here: not just the US! I called from the UK, and there’s a fair few more countries on there :) 

• [stumo]

  I called a month or so ago after seeing an article on the BBC (and also submitted it to BoingBoing, glad it’s got picked up).  Really encouraging research, I hope it pays off. 

  There are local numbers for the USA, Brazil, Mexico, UK, Spain, Argentina, Canada and New Zealand – so hopefully many people can join in 

• [Sparky005]

  Easier than giving blood! I made sure my room was quiet, a/c was off etc for the phone call. Not sure it was necessary but it seemed to me the less noise the better. 

• [Jonathan Roberts]

  My grandfather had Parkinson’s later in his life. One of my lasting memories before it really started to affect him was of him climbing a tree with my brothers and me. He came from a family of engineers (his father started the Aldis optical company, which became Rank Aldis in the 50s) and you could see that he had an independent and adventurous spirit until he died. Towards the end of his life he could hardly make any controlled movements and I couldn’t really understand anything he said, which obviously frustrated him a lot. He hated being treated like someone with dementia as his mind was obviously still strong, so one time he escaped from his nursing home and even climbed a short wall despite his disabilities to run away to my uncle’s house.  The last time I saw him, he had one of his father’s lenses (I think it was for a slide projector) which he took apart to show me the inner workings. At that point he couldn’t put it back together again, but you could see how much he still loved seeing how things worked and sharing that knowledge with others.

• [oasisob1]

  If they discover from my voice sample that I have Parkinson’s, will they call and let me know?

  • [KonstantinS]

    from FAQ :

    Can I get a diagnosis?No. Although we have shown that the technology can detect Parkinson’s from voice recordings, this initiative is for scientific research only. If you suspect you may have Parkinson’s disease, please visit your primary care provider or neurologist for professional advice.Can I get clinical information about my symptoms?No. As above, although we have shown that using voice recordings in conjunction with specialized algorithms, we can accurately reproduce symptom severity on standard clinical scales, this is a research project and does not provide clinical information. You should only alter your treatment regime in consultation with your primary care provider or neurologist.