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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World Parkinson’s Day 2022 - A patient centred model for Parkinson's research

Vanco Vlastimil (��ֳ� S.A.) — Mon, 11 Apr 2022 07:39:15 +0000

World Parkinson’s Day 2022 - A patient centred model for Parkinson's research

Nick Francis, Global Communications & Company Reputation

Vanco Vlastimi… Mon 11/04/2022 - 09:39

Last November ��ֳ�, Parkinson’s UK, and the Parkinson's Foundation in the U.S., announced that they had joined forces to establish a Patient Engagement Council for Parkinson’s Research (PECPR), building upon existing work they had been doing together for many years.

The aim 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 people living with Parkinson’s.

In the last few months, the group has made great strides in focusing in on what areas they consider will have the greatest impact and value for people living with Parkinson’s. Topics discussed included decentralised research, the optimization of clinical trial design and experience, an understanding disease modification therapy, and patient informed Target Patient Value Profiles (TPVPs).

The PECPR adopted the Clinical Trials Transformation Initiative (CTTI) prioritisation tool, to help identify which of the focus areas presented high-value opportunities. These topics were then ranked further leading to a consensus on the top priorities. The group overwhelmingly agreed to concentrate initially on TPVPs, to embed early patient involvement and co-creation in the drug development process.

The purpose of a TPVP is to ensure that the drug development process is efficient and provides all the required relevant medical, technical, and scientific information for evaluating the viable outcome of a potential new medicine. Historically the early design of TPVP’s was largely driven by joint insights from clinical scientists, desk research and conversations with expert healthcare professionals, with little or no participation of people living with the condition.

To help address these issues the PECPR will look to build a transparent and robust process clearly setting out where and how patients should be involved to inform and co-create the development of TPVP’s in the future.

In order to bolster representation from the Parkinson’s community the PECPR has welcomed three people who live with Parkinson’s. Each of them has a very personal Parkinson’s story, and they described why they wanted to be involved with the group:

Carol Schulte, a patient advocate from the United States, living with Parkinson’s for over 20 years: “My primary motivator for joining the PECPR is to ensure that the development of TPVP’s are inclusive of all groups, taking into account the concerns and considerations of all people living with Parkinson’s. When I was diagnosed in 1998, so little was understood about Parkinson's, even by the medical profession, and I have been fascinated by the development of the Movement Disorders specialty.”
Harold de Wit, a patient advocate from the Netherlands, diagnosed with Parkinson’s in 2018: “When I first learned I had Parkinson’s my world collapsed, but along the way I managed to accept this fact. But acceptance is not resignation. I will fight this disease until the better end. By joining PECPR I can extend this fight and make it a collective battle of many against this terrible disease. Finding new therapies or even a cure against Parkinson’s is all about co-creation of the Parkinson’s community. Patients, healthcare professionals, pharmaceutical companies and foundations have to come together to make a stand. PECPR is a beautiful example of co-creation to join forces!”
Marc van Grieken, a patient advocate from the United Kingdom, diagnosed with Parkinson’s in 2006: “I firmly believe that research will in the end lead to finding a cure. Without research: nothing will happen. Research with proactive, continuous and equitable involvement of people with Parkinson’s will get to the solution much sooner than research without such involvement. Patient Engagement Councils can play a meaningful role in this but how do we know what is meaningful? Only through participating in initiatives such as the Patient Engagement Council of ��ֳ�, the Parkinson’s Foundation and Parkinson’s UK, may I ultimately be able to express an opinion about success, limitation or even failures of ‘patient engagement.’”

We look forward to providing more updates on the work of the group as we progress our ambitious agenda.

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Parkinson's disease World Parkinson's Day PECPR Patient Engagement Council for Parkinson’s Research Patients

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World Parkinson's Day

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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World Parkinson’s Day 2022 - A patient centred model for Parkinson's research

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