The LEARN study: improving access to advanced therapies

Many advanced therapies are being explored for Parkinson’s. They include cell therapy, which involves introducing new cells into the body to replace damaged ones, and gene therapy, where small changes are made to a person’s genetic information within specific cells. Often, these therapies require brain surgery or injections to ensure that the treatment reaches the right area in the body.

Research studies like this can take a lot more time and commitment for the participant and their loved ones. So it's important that we understand what kind of impact being part of these trials has, and build resources that can help people with Parkinson's and their supporters safely and confidently take part. 

Dr Kali Barawi is working on this. She's a researcher on the LEARN study at Cardiff University. LEARN aims to understand the experiences of people with Parkinson’s who have taken part in complex trials involving brain surgery. They hope to learn how these therapies can be improved, and importantly, how they can be inclusive. 

Read more about the LEARN study on the Cardiff University website.

We caught up with Kali to hear more about her research, and the importance of involving people with Parkinson’s.

Tell us about your research

Kali: “We know that many health conditions, including Parkinson’s, lack treatments that can either cure or significantly reduce symptoms. We’re now exploring advanced treatments that use methods such as cell therapy and gene therapy.

“Research can often fail to reach a broad range of people. This is particularly true of research into advanced therapies. I'm interested in understanding why individuals from underrepresented communities, such as those in the Middle Eastern population, may be reluctant or unable to participate in research that could potentially benefit them.

“In the LEARN study, we’re asking a diverse range of people with Parkinson’s and other chronic conditions about research into advanced treatments to better understand how to design studies that everyone feels they can take part in. This will hopefully improve representation, and ensure that any new treatments are effective for everybody that needs them.

“To do this, I approached Parkinson’s UK to connect me with people affected by Parkinson’s. Together, we designed a survey to gather people’s experiences of taking part in trials and their understanding of advanced therapies.”

Why did you involve people affected by Parkinson’s in your research?

Kali: “While I can empathise and try to understand the experiences of people with Parkinson’s, I can’t replicate what it’s like to live with the condition. People affected by Parkinson’s have very unique and valuable insights, and pick things up that a researcher might overlook.  No matter how hard I review and review a document, if I share it with someone from the Parkinson’s community, they spot something that I simply couldn’t.

“It's great for us to learn from people affected by Parkinson’s, about their experiences and how best we can adapt our research to make it more accessible. This is at the centre of the LEARN study, where we try to make sure people with Parkinson’s are at the core of the research and its outcomes.”

How did you make sure you worked in an inclusive way?

Kali: “Over several months, people affected by Parkinson’s reviewed the survey. People shared their views in one-to-one discussions, focus groups, and by email and post. It was essential to offer multiple ways for people to participate, as this enabled us to engage with a more diverse group. We then adapted the survey, improved the information sheets, interview guidance and consent forms based on their feedback.

“To ensure transparency and maintain accountability, we developed a "You Said, We Did" document. This recorded all of the suggestions made by people affected by Parkinson's as well as the actions we have taken in response to their feedback.

"The last step before sending out the survey was to have both online and paper versions reviewed by an individual with Parkinson’s. After we'd made the final changes, we sent the survey out.

“Once we receive all the responses, we’re hoping to run another focus group to help us decide how we analyse and share the results so they reach as many people as possible.”

How did people affected by Parkinson’s change the survey?

Kali: “As scientists, we tend to make things sound really hard and love speaking at length on topics that interest us, but this often makes research inaccessible and quite frankly, boring. Every time I’ve worked with people affected by Parkinson’s, they’ve been great at making things more accessible for as many people as possible.

What’s next for the LEARN study?

Kali: “We're hoping to finish the survey, analyse the data and share the results whilst working together with people affected by Parkinson’s to do so. Beyond that, we're hoping to use the results to inform other trials and generally make research of advanced therapies for Parkinson’s more accessible".

What would you say to someone who’s interested in helping shape research?

Kali: “To make sure we’re providing the best treatment options for people with Parkinson's, it's really important that people do take part in research, and it's important to us that people have a positive experience. By helping shape research, you can help improve the quality of future research and potentially treatments for everyone.

“You can do as much or as little as you want. And it’s our job as researchers to make sure that people feel valued and that their work is being carried out in a meaningful way.”

The LEARN study is led by Dr Cheney Drew at Cardiff University and is sponsored by the Michael J. Fox Foundation. 

This research was shaped by the valuable contributions of a Patient and Public Involvement group member who passed away in 2024. Kali shared: “She was an incredible person with so much insight and wisdom, none of which I could replicate.”