Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's

PVI Feedback: delayed due to overwhelming response


If anyone else was wondering what form the feedback from PVI takes (I was), I can reveal that… I don’t know. But I did get an e-mail from them saying that they’d had an overwhelming response and couldn’t send any feedback right now, and to note that:
as stated in the FAQ, we cannot provide clinically-relevant information to you, such as a diagnosis of Parkinson’s disease, because this is a research project not authorized to provide clinical information. However, we plan to give some informative data about your voice. Most likely, this will be the form of a set of numbers that ranks your voice quality among the general population, on a number of different numerical scales.

I hadn’t read the FAQ (Frequently Asked Questions), and I did want to know if their system could recognise any Parkinsonian features in my voice. Ah well. It’s still a good thing.

And I would urge you to call them, if you haven’t already done so. It must be one of the easiest ways to participate in a research project that I’ve heard of.

If you’re in the UK, call 01865 521168. If you’re elsewhere, take a peek at the PVI (Parkinson’s Voice Initiative) Web site to find your local number.


3 thoughts on “PVI Feedback: delayed due to overwhelming response

  1. Delayed by how long? hours? days? weeks?

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