Working together to improve a clinical trial for Parkinson’s
By working together with researchers, people with Parkinson’s can help design higher quality research focused on what matters most to those living with the condition. Last year, people affected by Parkinson’s came together with researchers from the biopharmaceutical company UCB to help plan a future clinical trial.
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At Parkinson’s UK, we know that people affected by Parkinson’s are the experts in living with the condition. Through our patient and public involvement programme, we bring people affected by Parkinson’s together with researchers and companies to ensure research is shaped and driven by this expertise.
We have been supporting academic researchers to work with people affected by Parkinson’s for many years. But in order to speed up the process of finding better treatments for Parkinson’s, we recognised that we needed to expand this support to researchers in the pharmaceutical industry. People affected by Parkinson’s also told us they want the opportunity to share their views and experiences with the pharmaceutical industry.
“I think that it is important that pharma actually see and meet people with Parkinson’s — and that they appreciate the diversity of the condition and its symptoms.”
— Elaine, research volunteer
So, we began proactively exploring opportunities to collaborate with pharmaceutical companies and support them with involvement. This led us to start a partnership with UCB.
Who are UCB?
UCB are a global biopharmaceutical company with a focus on neurology and immunology. Their strapline — “Inspired by patients, driven by science” — demonstrates their commitment to involving people affected by health conditions in their research & development (R&D) programmes, and using patient insights to inform the development and testing of new treatments.
“ We listen. Our medicines treat thousands of people around the world and we are engaging with patients, their families and healthcare professionals to address their unmet needs.” — UCB
They believe involving people affected by health conditions in the R&D process will help produce meaningful therapies and treatments. Partnering with people affected by health conditions is powerful, and it is something we are starting to see more of in the pharmaceutical industry.
What are UCB doing for Parkinson’s?
UCB are planning a phase II clinical trial to test a new medicine for the treatment of early stage Parkinson’s. Phase II trials test whether a drug is safe and beneficial. These trials are carefully regulated and planned to set out how, when and where the treatment is to be tested. This process is expensive and can take a long time and it’s therefore essential to maximise the chances of success.
UCB wanted to get feedback from people affected by Parkinson’s on their plans for the clinical trial and gain valuable insights to help improve the trial design. Parkinson’s UK and UCB decided to host a workshop to bring together people affected by Parkinson’s and members of the UCB research team to discuss the clinical trial.
What we did
We identified people to be involved in the workshop through the Parkinson’s UK Research Support Network, our online network of over 5,000 people interested in Parkinson’s research. Since the planned trial was for people with early stage Parkinson’s, we tried to make sure that the attendees were at a similar stage.
15 people affected by Parkinson’s attended, including 2 family members of people with the condition. Ahead of the workshop, attendees were given materials to read to prepare them for the day. They were also invited to join an introductory video call, where they had chance to meet some of the other attendees, discuss the plan for the day and ask any questions.
The workshop was chaired by an external facilitator, and members of staff from Parkinson’s UK and UCB (including members of the research and development team) facilitated discussions.
Discussion
The day involved a mixture of short presentations, table discussions and group Q&As. The first session was focused on general aspects of clinical trials and included a talk by someone with Parkinson’s about their experience of participating in a clinical trial. The following sessions were focused on specific aspects of UCB’s planned trial, including —
- the tests to be included in the trial
- medication and packaging
- opinions on wearable devices
A medical writer recorded all discussions and produced a report of the day that was shared with attendees.
Impact on the research
The research and development team at UCB gained valuable feedback and suggestions for the planned clinical trial. People affected by Parkinson’s advised on a number of important aspects which could improve trial recruitment and retention, including —
- what kinds of information newly diagnosed patients might need in order to consider taking part in a clinical trial, and how long after diagnosis people should be approached
- the importance of clearly explaining to prospective participants what test procedures, such as spinal taps, involve. This should be done in appropriate, easy-to-understand formats (including videos and booklets), that explain what values these tools may have for diagnostic purpose and for the development of new therapies
- how study site visits could be made easier for participants
- how the medication packaging could be changed to be more convenient for participants
Impact on people affected by Parkinson’s
Attendees commented that they found the workshop extremely empowering and uplifting. They felt like their views were listened to and valued. People also said the workshop made them more confident in participating in clinical trials in the future.
Elaine, a research volunteer at Parkinson’s UK and workshop attendee, shares her story of being involved with shaping this research.
“Lovely mix of people with Parkinson’s, researchers and medics, all of whom were seriously interested in our discussions. A really uplifting experience.”
“I can’t think of many good things to say about having Parkinson’s… but… I find it extremely empowering to attend something like this.”
“The tone of the meeting was rather like a Parkinson’s family get-together. I felt at home.”
— feedback from workshop attendees
What’s next?
Importantly, this work demonstrates Parkinson’s UK’s commitment to improving collaboration in the Parkinson’s research community. We want to be a leader in bringing together all the key stakeholders in order to maximise progress towards better treatments and a cure for Parkinson’s.
The research and development team at UCB have been incorporating the insights from the workshop into their ongoing planning for the study. We don’t yet know when the specific phase II trial is planned to start, but beyond that we are working closely with UCB to explore further opportunities to work together.
We have another workshop planned for June this year, this time to discuss medication and packaging. The insights from this will be used in the planning of later stage clinical trials.
Kate Trenam, UCB’s patient advocacy lead for UK and Ireland, said this kind of work was vital to the company’s mission of transforming the lives of people living with severe conditions.
“We believe it is essential to involve the patient throughout the medicine development lifecycle to enhance our understanding of the real-life experiences of those living with the conditions we are researching and developing, so that we can deliver the right drug and the right care to the right patient.”
