Cure Parkinson’s is conducting a new online survey to explore patient perspectives on the use of lumbar punctures in Parkinson’s research and clinical trials.

Developed in collaboration with the Centre for Preventative Neurology and Queen Mary University and alongside people with Parkinson’s, we hope to use the findings from this survey to help inform future trial protocols and improve the quality-of-care participants receive when undergoing this procedure.

This survey is now closed – thank you to everyone who participated!

What are lumbar punctures and why are they important?

Lumbar punctures are a procedure commonly used in clinical trials to collect cerebrospinal fluid (CSF) – the fluids surrounding the brain and spinal cord. CSF is of interest because it can give a more accurate indication of what is occurring inside the brain than what can be observed in the blood. This is especially important for neurological conditions like Parkinson’s as researchers cannot directly access the brain to monitor changes.

In recent years, lumbar punctures have become an integral part of many Parkinson’s trials. Therefore, we have designed this survey to improve the patient experience and inform best practices for those undergoing lumbar punctures as part of Parkinson’s research. This survey builds on the feedback from a group of people with Parkinson’s held by Cure Parkinson’s last November regarding lumbar punctures.

Who can participate?

The survey is open to all people with Parkinson’s over the age of 18 (with the help of a care partner if preferred). Whether or not you’ve been involved in research that includes lumbar punctures, your experiences and insights are incredibly valuable to us and can help improve treatments for people affected by Parkinson’s.

The survey will be open until 13 October 2024. Your input will make a difference and we appreciate your involvement.

Take the survey
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