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UCL Queen Square Institute of Neurology

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The Live well with Parkinson's randomised controlled trial has now closed to recruitment. We have successfully recruited our target of 346 participants.

 

What is Involved?

After finding out more information and consenting to taking part in the study there will be a few things involved:

  • All participants will complete assessments at 3 time points throughout the year (at the beginning, after 6 months and after 12 months of starting the study). 

  • Half of the participants taking part will be allocated to the group receiving the Live well with Parkinson's toolkit, as well as their usual care. The other half will continue to receive their usual care as normal, with no access to the new resource. This enables the outcomes of people from both groups to be compared and the results to be trusted. It is imporant for people to be in both groups to answer the research question and decide if the toolkit can be adopted by the NHS and replace the current standard care. 

  • When participants have completed the assessments after 12 months we may ask them to be involved in an interview with a member of the research team to understand how they found using the new toolkit. This feedback will help the research team to make improvements to the toolkit and understand how best to implement it into the NHS more widely. 

Previous Participants Reasons for Taking Part

"I should do all I can to help [the hospital teams] because, they help me when I [see them]." "It is a principle of his, to give back."

"If you're going to make the best of it, it seems to me you need to manage it as well as you can."

"I suppose what I hoped to get out of it was to see if it plugged the gap... and it [did], so I'm absolutely delighted."

"I try and help research where I can, because it's good for you, it's good for us, it's good for everybody."

"I think its good to support research... because the more we do the better things can get for the people in the future."

PPI Group

Whilst we have closed to recruitment, if you would like more information on the study or would like to be involved in how we interpret and disseminate our findings to people with Parkinson's and wider society. 

If you would like to speak to a member of the study team to find out more then please contact us here: pd-care@ucl.ac.uk