World Parkinson’s Day 2025: Driving Change Through Collaboration

Andrea_Puletto — Fri, 11 Apr 2025 07:13:13 +0000

Kate Trenam, Patient Engagement Early Research

Andrea_Puletto Fri 11/04/2025 - 09:13

World Parkinson’s Day is an important moment to reflect on the progress made in improving the lives of people living with Parkinson’s and to highlight ongoing challenges.

The PECPR Initiative: A Model for Patient Engagement

One of the key initiatives leading the way in this space is the Patient Engagement Council for Parkinson’s Research (PECPR). Formed through a collaboration between ��ֳ�, Parkinson’s UK, Parkinson’s Foundation, and patients, the PECPR exemplifies how meaningful partnerships between industry, patient groups, and people living with Parkinson’s can drive impactful outcomes.

Started in 2021, the initiative has grown into a dynamic platform where all stakeholders work together shoulder to shoulder to ensure that patient voices are embedded at every stage of clinical trials. The PECPR has developed a comprehensive playbook to help clinical trial teams integrate patient input early in the research process. This ensures that trials are designed with the patient experience in mind, leading to more impactful and inclusive results.

The PECPR was honored to have received the Made With Patients Award in 2024 - the first global award celebrating innovators in patient engagement. Hosted by Patient Engagement for Medicine Development (PFMD), the award recognizes outstanding contributions across medicine development, MedTech, digital health sectors, and more.

A New Initiative for Health Equity in Research and Development

This year also marks the launch of the Parkinson’s Health Equity in R&D Community Leaders Board by ��ֳ�. The goal is to ensure that people from underserved backgrounds living with Parkinson’s are better represented in clinical trials. By doing so, ��ֳ� aims to conduct clinical trials that more accurately reflect these populations, ultimately providing benefits to all patients.

The board’s objective is to create a platform where community leaders can share their real-world expertise and provide strategic guidance to ��ֳ�. Together, they aim to drive impactful initiatives across clinical programs, ensuring that equity and inclusion are integral to the way research and development operate.

A Future of Hope and Progress

This World Parkinson's Day, we celebrate the strides made in research, equity, and patient engagement—and we reaffirm our commitment to creating a better future for all people living with Parkinson’s. Initiatives like PECPR and the R&D Community Leaders Board show that equitable, inclusive collaboration isn't just a buzzword; it's the foundation of meaningful progress.

Together, we are building a more inclusive and impactful research environment, one that aims to delivers unique outcomes for all communities. By continuing to listen, learn, and collaborate, we can ensure that the voices of people living with Parkinson’s remain central to everything we do.

Learn more about Parkinson’s

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Comment:

Posted by Yliana Carolin…, 15 April 2025

Very important patology

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Partnering with Patient Organizations for Parkinson's Research

eCMSadmin — Mon, 22 Nov 2021 17:00:00 +0000

Partnering with Patient Organizations for Parkinson's Research

Nick Francis, Global Communications & Company Reputation

eCMSadmin Mon 22/11/2021 - 18:00

��ֳ�, a global pharmaceutical company, has joined forces with charities Parkinson’s UK, and the Parkinson's 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 ��ֳ�’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 ��ֳ�’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:

Co-create a patient-centred standard model of research and development that meets the needs and priorities of all people living with Parkinson’s
Develop insights and learnings that can be shared across the Parkinson’s community to improve Parkinson’s research and avoid duplication of efforts
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 ��ֳ� 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 ��ֳ� in his opening meeting remarks.

John Lehr, Chief Executive Officer of the Parkinson's 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 values collaborations with other organizations, government, industry and academia to help advance Parkinson’s disease research and acknowledges that patients should always be at the center of these collaborations.”

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 ��ֳ� 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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Parkinson’s UK the Parkinson Foundation PD Parkinson's disease Parkinson's

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Parkinson's

World Parkinson’s Day 2025: Driving Change Through Collaboration

The PECPR Initiative: A Model for Patient Engagement

A New Initiative for Health Equity in Research and Development

A Future of Hope and Progress

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Partnering with Patient Organizations for Parkinson's Research

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