Research that reflects the lives of people with Early Onset Parkinson’s

Research is essential to improving our understanding of Parkinson’s, developing better treatments, improving services and supporting quality of life. At Early Onset Parkinson’s Disease Ireland (EOPD Ireland), we believe that people diagnosed with Parkinson’s at a younger age must be represented in research.

Early Onset Parkinson’s can be very different from later-onset Parkinson’s. People may be diagnosed while working, raising children, building careers, managing mortgages and supporting families. They can face challenges around employment, finances, relationships, parenting, mental wellbeing, access to treatment and long-term planning that may not be fully reflected in research focused on the wider Parkinson’s population.

We want research to reflect those realities.

Our Role in Research

EOPD Ireland works to ensure that the lived experience of people with Early Onset Parkinson’s is heard and considered in research.

We are interested in supporting research that can improve the lives of people with EOPD, while ensuring that research questions reflect the issues that matter to our community.

Our work can include:

    • Connecting researchers with people living with Early Onset Parkinson’s

    • Sharing appropriate research opportunities with our members and wider community

    • Supporting recruitment for relevant research studies

    • Helping researchers understand the experiences and priorities of people with EOPD

    • Supporting patient and public involvement in research

    • Promoting opportunities for people with EOPD to contribute their lived experience

    • Sharing research findings and developments with our community

    • Advocating for greater representation of younger people with Parkinson’s in research

Why Early Onset Parkinson’s Needs to Be Represented

People with Early Onset Parkinson’s may live with the condition for many decades. The impact of Parkinson’s can extend well beyond symptoms and treatment. A diagnosis at a younger age can affect:

  • Work and Careers –Managing employment, career progression, workplace adjustments, early retirement and financial security.
  • Family and Relationships- Parenting, relationships, caring responsibilities and the impact of a diagnosis on family life.
  • Mental Wellbeing – Living with uncertainty, adjusting to a long-term diagnosis and managing the emotional impact of Parkinson’s.
  • Exercise and Rehabilitation – Access to appropriate exercise, physiotherapy and rehabilitation programmes that meet the needs of younger people.
  • Treatment and Healthcare – Access to appropriate treatments, specialists, clinical trials and advanced therapies throughout the course of the condition.
  • Independence and the Future – Planning for the long term while living with a condition that may affect work, finances, relationships and independence.

These experiences matter when research priorities are being developed.

Research Priorities That Matter to Our Community

We are particularly interested in research exploring issues such as:

    • Early and accurate diagnosis

    • Treatments and advanced therapies

    • Deep Brain Stimulation (DBS) and access to advanced treatments

    • Exercise and rehabilitation

    • Mental health and wellbeing

    • Employment and working with Parkinson’s

    • Financial impact and social welfare

    • Relationships and family life

    • Parenting with Parkinson’s

    • Cognitive and non-motor symptoms

    • Technology and remote healthcare

    • Quality of life

    • Long-term care and support

    • Health inequalities and access to services

    • The experiences of people diagnosed with Parkinson’s under 65

We also welcome research that explores questions identified directly by people living with Early Onset Parkinson’s.

Your Lived Experience Matters

People with Early Onset Parkinson’s are experts by experience. Your experiences can help researchers understand what it is really like to live with Parkinson’s at a younger age and can help shape research questions, services and future supports.

There are different ways to contribute depending on the research project, including:

    • Surveys and questionnaires

    • Interviews

    • Focus groups

    • Patient and public involvement opportunities

    • Exercise and rehabilitation studies

    • Clinical research

    • Technology and digital health research

    • Studies exploring quality of life and lived experience

You don’t need to be a scientist or have any research experience to contribute.

Your voice can help shape the future of Early Onset Parkinson’s research.

Current Research Opportunities

We will share relevant research opportunities with the EOPD Ireland community through our website, newsletter and social media channels.

Research opportunities may include surveys, interviews, focus groups, patient and public involvement opportunities, exercise and rehabilitation studies, clinical research and studies exploring quality of life and lived experience.

Each research opportunity will provide information about who can take part, what participation involves and how to find out more.

Get in touch with us via info@eopd.ie for more information

Working With Researchers

EOPD Ireland welcomes research that can improve understanding, treatment, services and quality of life for people living with Early Onset Parkinson’s. We are particularly interested in research that recognises the specific experiences and needs of people diagnosed with Parkinson’s under the age of 65.

If you are a researcher and would like EOPD Ireland to participate in, support, promote or recruit participants for your research project, we ask you to provide information about your research before we can consider the request.

Research Project Review

Our research review process helps us understand the research being proposed and ensure that opportunities shared with our community are relevant, appropriate and clearly communicated.

Researchers may also be asked to provide supporting documentation and evidence of relevant ethical or institutional approvals, where applicable.

Submit a Research Project for Consideration

If you would like EOPD Ireland to consider supporting, promoting or recruiting participants for your research project, please complete our:

👉 EOPD Ireland Research Project – Questions Required Before Approval

Please note: Submission of a research project does not automatically mean that EOPD Ireland will participate in, promote or recruit for the study. Each request will be considered by EOPD Ireland based on the information provided, the relevance to our community and any supporting documentation required.

Research and Our Community

We believe people with Early Onset Parkinson’s should have a meaningful voice in research that affects their lives.

Our aim is to build constructive relationships with researchers while ensuring that research opportunities shared through EOPD Ireland are relevant, appropriate and of potential value to our community.

Where appropriate, EOPD Ireland may support research through:

    • Sharing approved research opportunities with our members and community

    • Supporting participant recruitment

    • Facilitating connections with people with lived experience

    • Supporting patient and public involvement

    • Helping researchers understand the priorities and experiences of people with EOPD

    • Sharing research findings and developments with our community

Research should not simply be about people with EOPD, where possible, it should involve people with EOPD.

Are You a Researcher?

If you are considering research involving people with Early Onset Parkinson’s, we would be interested in hearing from you.

Whether you are developing a research proposal, recruiting participants or looking for patient and public involvement, we encourage you to get in touch.

Submit Your Research Project

👉 EOPD Ireland Research Project – Questions Required Before Approval

Or contact us at info@eopd.ie.

Stay Connected

We will continue to share relevant research opportunities, research developments and opportunities for people with Early Onset Parkinson’s to have their voices heard.

Have a research question or opportunity you’d like to discuss?

Contact us at info@eopd.ie.

Early Onset Parkinson’s Disease Ireland
Supporting, connecting and advocating for people living with Early Onset Parkinson’s across Ireland.