And the inaccuracy now is what thirty to forty percent in misdiagnoses in Parkinson’s? How can that help eliminate some of those as well?
Dr. Little: The situation probably isn’t that bad, but yes, there is a fair amount of misdiagnosis when it comes to Parkinson’s. We get into some complex questions about what Parkinson’s disease is, actually. There’s a diagnostic standard called the UK Brain Bank Standard which is commonly used. For example if somebody has tremor on one side of their body and at the same when they’re prescribed L-dopa their symptoms improve, this is usually taken as very strong evidence of Parkinson’s. So we really hope that this technology can help provide additional objective information that can be useful in diagnosis, i.e. diagnostic ‘decision support’. That’s useful because in a lot of cases neurologists don’t have much objective information to go on.
You have eighteen thousand so far right?
Dr. Little: Yes that’s right – the Parkinson’s Voice Initiative has been able to recruit eighteen thousand participants – we now have eighteen thousand different voice recordings. Our estimate is about 12% of those have Parkinson’s.
What do you do with that data?
Dr. Little: In these calls we get anonymous information about the patient. We want to know their age, and we want to know whether they’ve been clinically diagnosed with Parkinson’s because this is our reference. We use that definitive clinical diagnosis in order to develop algorithms to categorize people as healthy or not. With the information supplied on the call, and using voice recordings, we then apply algorithms to the recordings that are looking for specific features in the voice. Different clusters of features we’ve determined in lab studies are useful indicators for making that discrimination. The next stage then is to pass those features to a so called ‘classifier’ – this makes a determination about whether or not this person is at high risk of having Parkinson’s.
So can you use this stand alone or do you see it as supplement only?
Dr. Little: I think it is certainly possible to use this technology outside of a medical context but of course the issue is that if you have a diagnosis or if this technology tells you that you may have a diagnosis then what do you do with that information? Of course it would be unethical to be able to have access to that information but without being able to do something about it. So we see this as being supplementary to existing approaches. I think that there are lots of applications for this. For example there are large areas of the world where the ratio of neurologists to patients is so low that basically most people who have Parkinson’s disease in those regions will never see a specialist. So, being able to extend the reach of very, very overworked clinical staff is certainly one of the things that we hope this technology can address.
What’s your ultimate goal for this study?
Dr. Little: The end goal of this study is to be able to produce a practical technology that can be uses in a medical context – to improve our knowledge about Parkinson’s disease and to improve individual lives by making this kind of objective information readily accessible.
How much longer will this study lasts? Can people call in?
Dr. Little: We would really like people to call in: and anyone can call to contribute their voice recording. It takes about three minutes so it’s a very painless process. There are local numbers in a large number of the countries; you just have to pick the number in your country. We’re going to keep running this, we think, probably for a few more months, but we don’t have a specific cutoff point at this time.
Did you expect this kind of response?
Dr. Little: No certainly not. It’s been an overwhelming response, and it’s been fantastic actually. It really shows that when you allow access to this kind of research and make it very, very easy for people to contribute then people do want to contribute and they will. It is about giving them an opportunity to make a contribution to research.
It would take years and years to get this many participants if you had a clinical trial where people had to come in.
Dr. Little: Yes that’s right, absolutely. In a majority of trials, people have to come in and get some kind of treatment or be assessed physically, and it takes a very long time to reach that level of recruitment.
How long did it take to get eighteen thousand?
Dr. Little: We started in late June; it is now mid October so only a few months.
Dr. Little: Yes, it’s overwhelming as I said!