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.

If you know someone with dysarthria who can record  29 or more phrases, or for more information, contact richard.cave@nhs.net, call 07898 721278, or click here.

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/

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.

Research Aims 

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.

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.

Click here to find out more.

Take part in a UK multi-centre study looking to find new genes that contribute to Parkinson’s disease risk and clinical features. 

Click here to find out more about getting involved. ClC

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

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 helen@cureparkinsons.org.uk 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.