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An invitation to join an important research study on Parkinson’s genetics

The study aims to identify people with two of the commonest genetic changes in Parkinson’s. These changes can be found in both early AND later onset cases, so the study is relevant to everyone with Parkinson’s. You can do everything from the comfort of your own home and by doing so you can help to make Edinburgh a centre for future clinical trials of new therapies specifically targeted at individuals with these genetic changes.

For more information please see the message below from Dr David Breen. When you join the study, please be sure to select ‘NHS Lothian’ when you are asked ‘Which organisation referred you?’


To: People with Parkinson’s in NHS Lothian

From: Dr David Breen, Senior Clinical Research Fellow and Honorary Consultant Neurologist

I am writing to ask for your help with an important research study called PD-FRONTLINE:

https://pdfrontline.com/en

Approximately 5-10% of Parkinson’s is caused by a single gene mutation. PD-FRONTLINE is a study being led by Prof. Schapira in London and there are several recruiting sites across the UK (including Edinburgh). The aim of the study is to identify people with Parkinson’s (PwP) who carry mutations in the GBA or LRRK2 genes (the two commonest genes implicated in Parkinson’s).

 This study is important because over the next 1-2 years there will be clinical trials for new gene-specific therapies aimed at slowing down Parkinson’s progression. I want Edinburgh to be a site for these studies (and I’m sure you do too). In order for this to happen, we need to identify sufficient numbers of PwP who carry abnormal variants in these genes and who would like to be considered for future studies.

PwP can sign-up to PD-FRONTLINE themselves via:

https://pdfrontline.com/en

After inputting some basic information, the central study team sends out a saliva collection kit to the home. This is returned to the study team in London via a SAE, which is used to extract DNA for genetic analysis. There is no need to come into the clinic for this study and so the study can continue during the Covid pandemic. The genetic testing result is fed back to the individual and (if they have consented) their clinician/GP. The central study team have produced a youtube video which helpfully runs through the online signup process:

https://youtu.be/wFPNufTQ9BE

When joining the study, please select ‘NHS Lothian’ on the appropriate dropdown menu when you are asked ‘Which organisation referred you’? This allows us to track how many local PwP have taken part in the study.

I think that this is a great opportunity to demonstrate our unique partnership in Lothian between clinicians, researchers and PwP. I hope that you can help. Recruitment to the study will end in November 2021.


 

 

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