CrowdLabbing: research by people with Parkinson’s, for people with Parkinson’s

A Scottish collaborative project – CrowdLabbing for Parkinson’s – is inviting people living with the condition into the lab to help find a cure

CrowdLabbing for Parkinson’s – a project conducted by the University of Edinburgh, UK – is offering people living with Parkinson’s the opportunity to conduct their own experiments to help find a cure for the condition.

The pilot project – formed in partnership with medical research companies Brainwave Discovery and Parkure – was launched at the end of July. As part of the initiative, volunteers will run tests on common fruit flies, which share nearly 75% of the genes related to neurodegenerative conditions with humans.

Scientists at the university have created a set of protocols to enable non-scientists to help with the research. They have also developed detailed instruction manuals and videos to teach participants about a variety of protocols – including screening experiments and monitoring results.

Frances Taylor, a CrowdLabbing volunteer who was diagnosed with Parkinson’s at the age of 70, said: “It’s very heavy when you are given a diagnosis.” She added that taking part in the research is “valuable because you do feel you are doing something in your own small way”.

The goal of the project is to eventually establish a collaborative group that empowers people with Parkinson’s to be at the forefront of research into the condition.

Dr Valentina Ferlito, CrowdLabbing project leader at the University of Edinburgh, told Parkinson’s Life: “We are currently applying for funding to proceed to the following steps: a full-scale drug screen with the full involvement of patients and also the establishment of a new collaboration that includes research institutions and patients with formal roles at every level of the research.

“We really hope this will go through, as our pilot was very successful and the participants very enthusiastic too.”

To find out more about CrowdLabbing, please email project leader Dr Valentina Ferlito at v.ferlito@brainwave-discovery.com.

Dr Valentina Ferlito (far right) leading a team of scientists and volunteers.

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