Participate in the Discovery Cohort study
Our Study and new changes ahead
The success of the Discovery Cohort is crucially dependent on the participation of people with Parkinson’s and earlier prodromal forms of Parkinson’s including individuals with the sleep disorder rapid eye-movement sleep behaviour disorder (RBD). 6% of RBD subjects per year will convert to Parkinson’s or a related disorder, therefore this is a key group of people for us to study. We are also grateful to control participants and relatives of Parkinson’s subjects for their study participation.
We are pleased to announce we have been awarded a further 5 years funding to continue the Discovery Cohort study from 2021 to 2026. A huge thanks to every single participant and person, who has donated their time to the Discovery study and OPDC as a whole, guaranteeing its success!
In the new study phase from 2021, the use of remote, tele-medicine has been included, meaning that cohort participants will be offered to be seen face-to-face or remotely (depending on study arm). Instead of a clinic visit you may be offered a video call appointment instead (or telephone call if you do not have access to a suitable device). We have been piloting this in Oxford during 2020 and have had positive feedback from participants. The video call will take around 1 hour, and there may be opportunity for someone from your local Parkinson’s UK branch to help you set up a computer at home to facilitate you getting online for research assessments. Questionnaires and consent forms can now also be completed online, however paper copies of the study questionnaires and freepost envelopes will continue to be available for those without access to these devices. There may be times where you will be invited to attend the clinic for an additional procedure, such as a memory test, a blood test, an MRI or skin biopsy. At anytime you can ask for more information or decline the visit. If you have any questions or concerns, please get in touch with us via firstname.lastname@example.org.
For all RBD participant visits we will still offer in-person clinic visits unless you let us know you are unable to attend. These clinics will be held either in Oxford, Cambridge or Sheffield (you can ask for more information when you are invited to your next follow up appointment). All of our relative and control participants will continue to be offered telephone follow ups as before, however some control participants will also be offered the opportunity to come in face-to-face.
Further details on the new study phase are available in the OPDC cohort newsletter Issue 13, February 2023.
You may be eligible to take part in the study as a new participant if:
- You have been diagnosed with REM sleep Behaviour Disorder following an overnight sleep study (Polysomnogram-PSG) and are willing to travel to one of our sleep research sites at Oxford, Cambridge or Sheffield.
We are no longer recruiting people with Parkinson's (PwP) or this study, as we continue to follow up PwP from the original cohort of 1000 PwP, recruited from 2010 to 2016. If you are interested in taking part in other research studies, you can visit the below websites:
To register your interest in participating in RBD research
Participants' perspectives and experiences
The experience has been fascinating and thorough, and has helped me understand my condition a bit more. - Lucy Norman - PD participant
I wanted to take part to support the efforts my brother is making. I would like to help the medical community in their efforts to diagnose the condition earlier. - Michael Doherty - PD relative
Taking part in this study gives me the satisfaction of being of some help. - Hubert Allen - control participant
I am keen to do anything I can to help medical research.
- Alun Davies - RBD participant
We are very excited and enthusiastic about the programme. I don’t see how somebody who has got something like this could not do this, it is like part of the treatment to me. - Anonymous - RBD participant
To find out more about the study, please read the relevant information sheets:
Expression of interest to participate
We are still recruiting:
- People diagnosed with REM sleep Behaviour Disorder.
If you are interested in participating please do the following:
- Download and send us a completed form (PDF) via email (email@example.com) or through the post (please see the address enclosed).
For further information, please contact the research team at:
Tel: 01865 223166
Please note that we are no longer recruiting people with Parkinson's for this study. If you are interested in taking part in other research studies, you can visit the below websites:
Parkinson's UK Brain Bank
You can pledge to donate your brain for research to the Parkinson's UK Brain Bank - the world's only brain bank solely dedicated to Parkinson's research. The donation can help find a cure to transform the lives of 145,000 people living with Parkinson’s in the UK.
Parkinson's UK local groups
Research Support Network
The Parkinson’s UK Research Support Network is an online network for people driven to help find a cure and better treatments for Parkinson’s. The network is open to everyone, you don’t need a scientific or research background. It’s free to join and members receive regular updates about research news and events.
If you have any questions about the Research Support Network then please contact Parkinson’s UK on 020 7963 9398 or at firstname.lastname@example.org.