What a time to take part in Parkinson’s research
International Clinical Trials Day is 20 May. To celebrate, we look back at some of the research opportunities we've shared, and share your experiences of taking part. We’ll also give you the information you need if you’re thinking about taking part in research.
A successful year
It's amazing how much we’ve achieved in one year! Last International Clinical Trials Day we were just building up to our live Q&A session to answer your questions about taking part in research.
I was encouraged by how many different people came forward to ask our expert panel their questions about taking part in research. Your questions along with the answers from our panel — Richard Windle, Manuela Tan and Dilan Athauda — became the raw material that went into our fantastic new resource ‘An Introduction to Taking Part in Research’.
To make sure the booklet was as useful as possible, we got feedback from Parkinson’s nurses and the response was brilliantly positive. Now we’re looking forward to sharing it with as many people as possible. It is free to order or download from our website.
“I think the leaflet is great! It’s not got too much info and if any more is needed then the contact details are there. It also feels quite welcoming. I’d be happy to have it in my clinics.”
— Cheryl, Parkinson’s Nurse Specialist
So now, it feels like a great time to reflect on all that has been happening in the last year.
Opportunities you took part in during 2016
Last year we shared 58 different research opportunities, spanning the range of research areas from understanding how Parkinson's develops to finding new treatments.
Sharing more opportunities with you than we have achieved in previous years shows we are becoming the go-to place for research teams to find participants.
There were opportunities to take part in:
- an online questionnaire looking into fatigue
- the development of a system for clinically rating Parkinson’s symptoms
- a trial to investigate the potential of statins as a Parkinson’s treatment
and much more.
One of the most successful pieces of research we supported was the UMotif 100 for Parkinson’s research trial. To find out more about the 100 for Parkinson’s trial, check out their website.
For this study, people download the UMotif App and completed a daily activity diary for 100 days. 3143 people took part in Europe and America, with 719 of them saying they had heard about the project through us. If you were one of the people who took part, thank you very much!
In February 2016, uMotif - the world's leading patient data capture platform - launched a global movement, asking…umotif.com
The huge response this received shows how keen everyone is to get involved with taking part in innovative research. On top of this, the range and depth of the research gives hope for better treatments and improvements in quality of life.
Sharing your experience of taking part
We hear from many people who have taken part in research. They want to share their experiences to help others who may be thinking about taking part.
“If you haven’t taken part in any research I would encourage you to try it.”medium.com
We have so many stories to share, so we put together this short video with the help of our volunteers and researchers:
We have also been looking at how we share research opportunities. You can find a comprehensive and up to date list of opportunities to take part in research on our website. You can peruse this at your leisure, or maybe let us know of anything going on that we should add to it.
Part of making sure we know about as many of the research trial currently looking for people to take part is by making links and connections with those involved. We have been working hard to join up with other research organisations such as the National Institution of Health Research (NIHR).
But how do we keep moving forward?
We are looking for ways to continue to increase the number and range of opportunities to take part in research. And over the last 6 months we‘ve been trying to find out what people really want.
We know that the research journey affects 3 key groups of people — people affected by Parkinson’s, healthcare professionals working in the NHS and researchers. We still have questions to answer, such as:
How do people want to find out about opportunities to take part?
What would help a busy clinician to share research opportunities with their patients?
What do researchers say they need to help them find people to take part?
These answers are at our fingertips and by this time next year we hope to be sharing the results of this fruitful search with you.
In the meantime, if you would like to hear about what opportunities are out there for you to take part, join our Research Support Network to get regular updates about research opportunities.