What is your role in Parkinson’s research?
Would it surprise you if I told you there is a movement happening in Parkinson’s research?
Perhaps not. But there is energy building. Years of scientific discoveries have helped us to understand what is going wrong in the condition and it does feel like we’re on the cusp of a breakthrough.
But if I told you the research movement I’m talking about is being driven by people affected by Parkinson’s, you might ask me how.
The fact is, people affected by Parkinson’s are today playing a greater role in the search for a cure and improved therapies than ever before — and this role is no longer restricted to people taking part in research.
Many people at #WPC2016 this week will have had opportunities to take part in research. Participants in clinical trials are essential for the success of new treatments and therapies going through the research process. The thousands of brave participants that take part in clinical research every year are more than in part responsible for the discoveries that have been made.
But there are, perhaps, other lesser-known projects happening that put people with Parkinson’s at centre stage. Today clinicians, researchers and people affected by Parkinson’s are working in partnership to plan, shape and deliver research and clinical trials. From identifying and prioritising research questions, to helping to design and manage the research, people affected by Parkinson’s are more involved in than ever before.
This is an important step. Involvement of patients in medical research is essential to understand the patient experience and perspective. And in Parkinson’s, where everyone’s experiences and symptoms are different, it is even more crucial that as many people as possible have their say.
Now’s time to join the involvement movement and help to ensure that research addresses issues that are important to people with Parkinson’s, that studies are likely to recruit and retain participants and that results will be meaningful to people who live with the condition every day.
For those lucky enough to attend #WPC2016, you can hear more about your role in research at our pre-congress panel session on Tuesday at 1.20pm PDT.
Or find out about how people affected by Parkinson’s have already helped to shape research: https://www.parkinsons.org.uk/haveyoursayinresearch
Researchers may be interested in how we can help with Public and Patient Involvement: https://www.parkinsons.org.uk/researchinvolvement
