At the cutting edge of Parkinson’s research, a €1.8 million European project known as 4DPD-Omics is combining high-tech science with the lived experience and insights of people directly affected by the disease. With researchers from across Europe—including Ireland, the Netherlands, Germany, France, Sweden, Hungary, and the Czech Republic—the project is not only studying the molecular roots of Parkinson’s but also working closely with patients and the public to shape how that research is done, communicated, and applied. 

The 4DPD-Omics project is led by Professor Jochen Prehn, Chair of the Department of Physiology and Medical Physics at RCSI University of Medicine and Health Sciences, and Principal Investigator at FutureNeuro. Dr Niamh Connolly, a FutureNeuro Funded Investigator and Lecturer at the Royal College of Surgeons in Ireland, is also a key partner in the project. The study is focused on understanding why some brain cells are more vulnerable to Parkinson’s than others, using an advanced “multi-omics” approach—integrating data from genomics, transcriptomics, proteomics, and epigenomics. 

Supported by the EU Joint Programme for Neurodegenerative Diseases (JPND) and funded in Ireland by the Health Research Board (HRB), the project aims to uncover new pathways toward earlier and more precise interventions. 

What makes 4DPD-Omics stand out is its strong foundation in Patient and Public Involvement (PPI). From the outset, people with Parkinson’s have had a seat at the table, influencing how the research is shaped and shared. This includes advisory panels led by Parkinson’s Alliance Netherlands and FutureNeuro’s own PPI group in Ireland. 

The Irish PPI panel was formed following FutureNeuro’s PPI Open Day in April 2024, where a roundtable discussion sparked focused interest in Parkinson’s disease. Since then, the group has played a key role in guiding the project’s public-facing strategy, raising important questions around visibility, equity, and urgency. 

The panel has identified three core themes to anchor their communications: 

• Parkinson’s is the fastest-growing neurological condition in the world. 
• Treatment options remain limited, with some core medications unchanged since the 1950s. 
• There is a need to increase public engagement with the realities of Parkinson’s disease.  

The PPI members are also exploring future materials on topics such as the invisibility of Parkinson’s symptoms and the importance of accelerating research efforts. A recent flyer designed to spark wider awareness, features the slogan “The Elephant in the Room Just Got Bigger”, and invites the public to join the race for a cure. It sets out key unanswered questions about the disease, including why the Parkinson’s brain is different and which brain cells are most vulnerable. Register your interest and find out how you can contribute here. 

Nicola Paquin, a member of the FutureNeuro Parkinson’s PPI Panel, said: 

“Being part of the Patient and Public Involvement (PPI) group at RCSI has been a powerful way to deepen my understanding of Parkinson’s disease while helping shape the research that impacts our lives. It’s given me the opportunity to engage directly with scientists and researchers, fostering honest, meaningful conversations about the realities we face every day. By sharing our diverse experiences, we’re not only raising awareness but helping researchers appreciate the nuances and complexities of life with Parkinson’s—and, crucially, drawing attention to the elephant in the room: the unmet needs that are too often overlooked.” 

Meanwhile, the associated PPI panel in the Netherlands is leading efforts to raise awareness of the value of brain donation for research—a vital but often overlooked issue. In Ireland, PPI member Joe Condon has been investigating opportunities to support this work locally, including contact with the Dublin Brain Bank. The group hopes that increased public and patient interest may help prompt action. 

Looking ahead, Irish PPI member Nicola Paquin will represent the group at the upcoming Scientific Advisory Board meeting in Amsterdam, where she will connect with international counterparts and bring the Irish panel’s perspective to the broader project discussion. 

Together, the PPI panels in Ireland and the Netherlands are ensuring that research into Parkinson’s doesn’t just happen in labs and clinics—but in conversation with the people it aims to benefit. By sharing their lived experience, raising vital questions, and helping shape how research is communicated, these panels are helping projects like 4DPD-Omics remain grounded in real-world impact, urgency, and inclusion.