DIVERSE
PD
DIVERSE
PD
The Participation Process
On this page, you can find out what participation involves, from registering your interest and completing the consent process to the research visit, questionnaires and sample collection.
We will explain each step in advance, answer any questions you may have, and ensure you have the information you need to make an informed decision.
02
Read the Participant Information Sheet
The Participant Information Sheet explains the purpose of the DIVERSE-PD study and why you are being invited to take part. It provides information about what participation involves, including the assessments, questionnaires and samples that may be requested, as well as the potential benefits and risks of taking part. It also explains how your personal information and biological samples will be stored, used and shared for research, what happens to the results, and your rights as a participant, including consent and withdrawal. Please read this document carefully before deciding whether you would like to participate.
03
Phone call from a researcher
A member of our research team will call you to discuss your participation and answer any questions you have. They will then talk you through the consent process for the study which you can complete over the phone or online.
04
Questionnaire
We will provide you with a questionnaire either online or by post depending on your preference. The questionnaire should take about 30 minutes and we will ask about your background, your family and medical history, and your Parkinson's symptoms. A separate questionnaire will also be provided to establish your history of environmental exposures. This provides us with important information on your specific Parkinson's history which we will later correlate with your clinical and genetic information.
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Research Appointment
An appointment will be arranged with a neurologist from our research team so that we can discuss your Parkinson's history and examine you. Appointments will last between 30 and 60 minutes and can be conducted either in-person or online depending on your preference and availability. In-person appointments will take place at The National Hospital for Neurology and Neurosurgery in London.
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Provide a blood or saliva sample
Most participants will be asked to provide a biological sample so that we can analyse your DNA for genetic variations associated with your disease. We will ask for either saliva or blood samples. Saliva samples are collected in a pot which will be sent to you by post. Blood samples can be collected at in-person appointments, or a blood testing kit will be sent to you by post which can be used by your local GP or phlebotomist.
What happens next?
After you have taken part in the study all samples and information you provide will be stored securely within our research centre. Your personal and contact details will be stored separately from your research data to protect your privacy.
Our research team will analyse your samples and anonymised research data to investigate the genetic causes of Parkinson’s disease. This may include comparing your data with other research datasets and using advanced genetic technologies to identify genetic changes that may help explain the condition.
Our findings will be shared through scientific publications, research networks, peer-led networks and patient and public involvement and engagement (PPIE) organisations, helping to inform future research and improve understanding of Parkinson’s disease.