I belong to the Parkinson's Disease Foundation in the USA as well as Parkinson's UK. I was looking for ways to help PD researchers and read about an app for Apple iPhones which has been written to collect research data for PD ( in the USA it,s PK ). The Apple app is only available in the USA for now, so I asked if there were other ways to help with the collection of research data and was directed to the Michael J Fox web site, which has an app to collect PD research data. I wonder if anyone in the UK has also used the Michael J Fox site and whether this is recommended by Parkinson's UK. This does not preclude me from taking part in any UK based data collection.
Hi dave st pier
Thanks for your post, this is a really interesting area of research that is growing fast!
Both Michael J Fox and Apple have recently released new apps that are designed to collect data from people affected by Parkinson’s for research. We wrote a news story about this last month – http://bit.ly/1FdoUl9
We’ve been in touch with the team at Apple to try and find out when it might be available in the UK but as yet they seem unsure. We’ll keep an eye on it and will highlight any updates to our supporters through our website and publications.
In the meantime there are other ways to get involved in research. We keep a list of Parkinson's research projects around the UK which may be looking for participants as well as control subjects on our website here: www.parkinsons.org.uk/researchstudies
You may also be interested to join our ‘Research Support Network’ can read more about the network on our website here – www.parkinsons.org.uk/rsn. If you join the network you will receive frequent emails from us about opportunities to take part in research, all the latest research news and research events.
The Research Team
we have recently received funding from Innovate UK to develop an app and system to monitor and analyse longitudinal trends of motor symptoms and we would be very interested to get you involved. We are currently running a survey for example to get a sense how PD patients actually use mobile phones and we are also looking for people to take part in trials from July onwards.
By the way, I am a computer scientist working at Birkbeck College, University of London and this project is in partnership with UCL and a couple of IT companies.
It would be great if we could connect with you.
I have a what would be considered a old 'mobile fone' its a nokia , it is about the right thickness and size for me too hold, it has buttons that stand out a little & of almost the right size for me too press effectively ~something too consider beyond apps with parkinsons.
I have looked at smart fones(my nokia isn't) and friends who have them, but i found them difficult too hold with the touch screens going too unwanted area's within the fone with tremor and clumsy hands they wouldn't be suitable for me.
the doro? fone big and bulky buttons looked like it lacked features too move into the world of smart fones and App's? and the only other options were smaller nokia's than the one i presently have which again make look hard too hold and operate and prob again lacking app ability.
Not too much choice if you have parkies!.