UCB, a global pharmaceutical company, has joined forces with Parkinson's UK, and the Parkinson's Foundation in the US, to establish a Patient Engagement Council for Parkinson's Research.
The council will aim to embed patient involvement in the earliest stages and throughout each step of UCB's Parkinson's drug development programme, improving long-term outcomes for patients.
Launching the partnership
The chief executives of Parkinson's UK, the Parkinson's Foundation and UCB all attended the partnership's first meeting, together with other representatives from the organisations.
The participants collectively agreed that they want people with Parkinson's and the people who love and care for them to be at the heart of future work. So the next step is to recruit people affected by Parkinson's to join the Patient Engagement Council.
Caroline Rassell, Chief Executive of Parkinson's UK, applauded the partnership's sense of focus and reiterated the importance of listening to patients:
"At Parkinson's UK, we believe that there will be a cure for Parkinson's, but to get there, we need to work together. That means with other organisations like UCB and the Parkinson's Foundation, but also researchers, and most importantly, people living with the condition.
"This novel collaboration is uniting our collective skills and driving forward discoveries, putting patients at the heart and start of what we do."
What happens next?
The council will work together over the coming months to define the focus of the collaboration. A key aim is to embed patient involvement early in the research and development process, ensuring that patient insights are influencing research questions and study design from the earliest stages.
Other areas being explored include developing and selecting outcome measures that are meaningful to patients, making clinical trials more flexible and accessible, and increasing diversity and inclusion in Parkinson's research.
Bring your voice to research
People affected by Parkinson's – including partners, family members and friends – can help shape research at every stage. From setting priorities for research to working to develop projects with researchers and companies, there are many ways to bring your ideas and experiences to research.