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Partnering with Patient Organizations for Parkinson's Research

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    UCB, a global pharmaceutical company, has joined forces with charities Parkinson’s UK, and the Parkinson Foundation in the U.S., to establish a Patient Engagement Council for Parkinson’s Research, building upon existing work they have been doing together for many years.

    The initial remit of the council is to ensure that patient insights are central to the overall strategy and activities across UCB’s Parkinson’s disease research and early clinical development program. Through this collaborative partnership, the council aims to embed patient involvement in the earliest stages and throughout each step of UCB’s Parkinson’s drug development program to improve outcomes for patients, with a long term vision being that all therapeutics for Parkinson’s be developed by a fully integrated and equal partnership between all key relevant stakeholders.

    The inaugural meeting of the council took place in late September where the group set out its broad goals and objectives as follows:

    1. Co-create a patient-centred standard model of research and development that meets the needs and priorities of all people living with Parkinson’s
    2. Develop insights and learnings that can be shared across the Parkinson’s community to improve      Parkinson’s research and avoid duplication of efforts
    3. Elevate the role of patient engagement within the international Parkinson’s research community, enabling increased opportunities for collaboration and shared learning to advance Parkinson’s research and development.

    The meeting was attended by the Chief Executive Officers of the Parkinson’s Foundation, Parkinson’s UK and UCB together with additional representatives from all parties. The participants collectively agreed that they want people affected by Parkinson's to be at the heart of future work, and so the next step is to recruit people affected by Parkinson's to join the Patient Engagement Council.

    “Patients are the source of everything we do and should be integrated into all that we do. Better understanding patients and disease subpopulations can help to formulate new scientific hypotheses that can be translated into a differentiated medicine. This important new initiative is not just a connection, it is a connection for a better outcome, for providing unique outcomes for our patients,” commented Jean-Christophe Tellier, Chief Executive Officer of UCB in his opening meeting remarks.

    John Lehr, Chief Executive Officer of the Parkinson Foundation recognized that: “Parkinson’s disease is very challenging. It requires a collaboration of many partners and stakeholders across the spectrum. The Parkinson’s Foundation has always thought in terms of collaborations, such as Parkinson’s UK and any other organizations in the Parkinson’s space including government, industry and academia and always with those affected by Parkinson’s disease.”

    Caroline Rassell, the newly appointed Chief Executive Officer of Parkinson’s UK, applauded the sense of focus and reiterated the importance of listening to patients. She said: "At Parkinson’s UK, we believe that there will be a cure for Parkinson’s, but in order to get there, we need to work together. That means with other organizations 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."

    Members 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.

    We are very excited about this project and we will endeavor to provide regular updates to the Parkinson’s community on our progress as we get to work on this important mission.

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