Get involved in Parkinson's researchOpen opportunities and ideas for getting involved in research
Open opportunities: Explore the toggles below to find out more about and get involved in any of our open opportunities:
PD Frontline is a remote study offering online genetic testing for people with Parkinson’s, so they can be referred to appropriate clinical trials and other studies. The registration process is designed to be quick and easy to navigate, and it only takes 10 minutes to complete!
#GetTrialReady – How to sign up!
- Visit www.pdfrontline.com register your details, sign the consent form and login
- Answer some questions
- The team will send you a saliva collection kit in the post
- Return it in the pre-paid envelope
For more information on the study, please visit the Cure Parkinson’s Trust website: https://www.cureparkinsons.org.uk/News/pd-frontline
Potential help with dysarthria
Moderate to severe dysarthria makes face-to-face communication challenging. Voice activated technologies, like Google Assistant, are extremely useful, but difficult to use.
Project Euphonia is ‘training’ Google Assistant to understand dysarthric speech and ‘translate’ it as it is spoken. The words are then displayed on a smartphone or AAC. This allows some people to keep talking for longer at the same speed – and to be understood.
Parkinson’s Disease Symptom Evaluation in a Naturalistic Setting producing Outcome measuRes using SPHERE (Sensor Platform of HEalthcare in a Residential Environment) technology.
This study will involve staying for 5 days in a house in the centre of Bristol and living your normal lives while your movements and activities are monitored (by static/wearable sensors), then feeding back to the study team about your experience. All expenses will be reimbursed. Please see the poster below for more details.
This study is aiming to start recruitment in the Autumn. If you are interested in taking part, please contact Dr Catherine Morgan for more information:
Telephone: 07970 657958 (Monday, Thursday, Friday)
Address: Movement Neuroscience Group, Bristol Brain Centre, Southmead Hospital, Bristol, BS10 5NB
As technology is becoming increasingly fundamental in our lives, understanding more about how it can help will be just as important. This exciting new study “Intelligent Parkinson early detection guiding novel supportive interventions” is looking to identify differences in the patterns of participant phone use which may be with known Parkinson’s symptoms.
This study is part of a larger project which is hoping to develop a smartphone
application which can identify early onset of Parkinson’s. Click here to find out more
For more information visit: http://www.i-prognosis.eu/
Effects of gene variants of AQP4 on Parkinson's
Opportunity to take part in a study at King’s College Hospital looking at potential gene variants of AQP4 and its relationship with Parkinson’s and sleep. Travel reimbursements will be offered.
The study aims to understand the relationship between a newly discovered internal waste disposal system in the brain called the ‘glymphatic system’ and the occurrence and progression of Parkinson’s.
What will it involve?
- Donating blood samples for genetic analysis
- A short (40 minute) clinical assessment
- Wearing of a sensor watch and completion of a sleep diary for 2 weeks at home, to monitor sleep levels
- Online assessment emailed and done once from home
I’d like to take part. Who do I contact?
Click here to contact Pavlos Zinzalias.
Vision in Parkinson's Study
We are looking for people with Parkinson’s who are over 50, diagnosed less than 10 years ago, based within the M25 to take part in an innovative and engaging study at UCL, London.
Parkinson's Family Project
Take part in a UK multi-centre study looking to find new genes that contribute to Parkinson’s disease risk and clinical features.
In the last few years our understanding of the causes of Parkinson’s has rapidly developed, and now we need to translate that understanding into treatments that slows the progression of the condition. We now believe that there are many different causes for example we know that variants in mitochondrial genes can cause specific forms of Parkinson’s. Mitochondrial genes control the mitochondria which create energy within the cells. What we learn from genetic forms of Parkinson’s may also be relevant for other forms of the condition. The aim of this study is to collect information and samples from people with Parkinson’s and attempt to group and stratify people with Parkinson’s based on markers of mitochondrial dysfunction. The investigators are studying people with both genetic forms of Parkinson’s and those with idiopathic Parkinson’s (i.e. where the cause is not known), as well as a healthy control group. All groups will undergo standardised clinical assessment to collect information on several aspects of their condition and will be asked to provide blood, urine and optionally cerebrospinal fluid and skin samples from which various biochemical and genetic tests will be performed. All participants will be asked to fast overnight (10 hours) before the study appointment, but all medications can be taken with water. Fasting is required as some of the tests are sensitive to different types of food so can affect the results. The investigators are particularly interested in those with known genetic causes of their PD such as Parkin and PINK1 carriers, as well as people with early onset Parkinson’s (diagnosed when less than 40 years old) and healthy controls can be non-blood relatives such as wives, husbands or friends. Study appointments will take place at the Royal Free Hospital in London. Up to £50 of travel expenses can be claimed to attend the visit.
For more information and to register to take part: https://clinicaltrials.gov/ct2/show/NCT0342189
University College London (UCL) and the Wellcome Centre for Human Neuroimaging are seeking over 200 volunteers including people with Parkinson’s, people with Rapid Eye Movement Sleep Disorder and healthy controls to take part in a novel imaging study to see whether brain imaging can be a helpful predictor of disease change.
All participants must be between the ages of 35-75 years old and be safe to scan in the MRI. Those with Parkinson’s must have received their diagnosis within the last two years. Travel costs for all participants and for those who require a travel companion will be covered by the study team.
To find out more about taking part, please contact the study team:
Please click here for the Movement Disorders Centre at the UCL Institute of Neurology, to explore all of UCL open research studies.
100,000 Genomes Project
The 100,000 Genomes Project only remains open until 30th September. If you have early onset Parkinson’s or atypical Parkinson’s (onset 45 years of age or under or history of Parkinson’s disease in the family), are based in the UK and would like to contribute your genetic data to this pivotal government funded study please do e-mail firstname.lastname@example.org and we can direct you to the investigators who can provide postal consent forms. Participation involved providing a blood sample via your GP or local consultant.
PD Warrior: Volunteers needed
PD Warrior is hosting a series of Instructor Courses for health professionals and are seeking volunteers with Parkinson’s to assist them for demonstration purposes.
Volunteers should be reasonably active, however, we can take people less active if they are motivated to exercise and a carer is present during the session. We would appreciate any assistance in sourcing volunteers for our Instructor training courses.
All volunteers will receive a free assessment as well as The New Parkinson’s Treatment book, exercise circuit and taste of PD Warrior! Please see further details of the training courses via the following link – www.pdwarrior.com/education.
Course dates are available across the UK, as detailed below:
South London May 23
Retford June 20
London Sept 5
Glasgow Sept 26
Coventry Oct 10
London Nov 14
If you are interested in volunteering, please email email@example.com or for more information please visit the PD warrior website www.pdwarrior.com.
World Parkinson's Conference
Find out what we got up to at this year’s World Parkinson Coalition 2019 in Kyoto, Japan: WPC 2019.
Find Clinical Trials
Please explore and take part in the open surveys advertised on our Parkinson’s Movement website.
Rallying to the Challenge
Rallying to the Challenge annual conference Annual meeting to overcome barriers in clinical trials.
Fox Insight Ambassadors
Five ambassadors needed for participant recruitment to The Michael J Fox Foundation’s comprehensive, international online clinical study, Fox Insight – click here to find out more.
Evaluate sleep devices
Do you use an app or device to measure or monitor your sleep? We want to hear from you! Which app or device to you use? Which aspects of your sleep does it measure? What do you like about it? What could be improved? Please send your answers and any other thoughts you have on apps and devices to monitor sleep in Parkinson’s to firstname.lastname@example.org