Taking part in research — you’re in control

The word research can make people think of different things and evoke different emotions. Perhaps white coats, hospitals, and for some fear of the unknown. We want to use this blog to bust some myths and inform you of exactly what research is all about and why it’s important, especially with regard to Parkinson’s.

Parkinson’s is a complex condition that can impact people in completely different ways. Although there’s medication that can help manage some of the symptoms, currently there are no treatments that can slow or stop the condition.

Thanks to more than 50 years of Parkinson’s research, we understand more about the condition than ever before. But researchers are still piecing together the clues as to what is causing Parkinson’s and the best way to monitor and measure the progression of the condition.

The only way to accelerate this knowledge and investigate potentially groundbreaking new treatments, devices and therapies, is through research.

Everyone can play a part. People with and without Parkinson’s can take part in clinical research.

What is clinical research?

The term clinical research simply means any study that involves people taking part.

Clinical research is vital. It helps us learn more about how our bodies work, what goes wrong in conditions like Parkinson’s, and to test potentially life-changing new treatments and therapies.

Without people stepping up to take part in clinical trials and studies, the medicines, therapies and support we have today simply would not exist.

What does taking part in research involve?

Taking part in a research study can come in many forms, from questionnaires to trialling new treatments. Some research can be done from home, while other opportunities will involve visiting a hospital or research centre.

Taking part in research could be:

• answering online or paper questionnaires and surveys
• sharing experiences with researchers
• trialling new treatments, therapies and medical devices
• undergoing assessments to look at movement, thinking and memory
• providing samples from blood and saliva to measure specific genes or proteins.  

Sharing your experiences with researchers

A vital part of research looking at improving care and finding better treatments and therapies is gathering people’s experiences of Parkinson’s. This might involve filling out questionnaires on paper or online, or having a chat with a researcher who will ask about some specific symptoms.

Studies that involve sharing your experiences are often referred to as observational research. These studies may be a one off or may look at how people change over a number of years. For instance, you might be asked to keep a diary of your sleep, or diet, and how these things affect your day to day life. Documenting your experience can help researchers build a more complete picture of Parkinson’s.

Providing samples or undergoing assessments

Some research will be looking for people to help better understand the biological changes that are happening in people with Parkinson’s, compared to people of a similar age without the condition. This could involve brain scans to understand what’s happening to the structure or function of parts of the brain, measure levels of proteins and chemicals that carry out important jobs or involve specific assessments to look at things like memory or movement changes.

These types of studies aim to find better ways to monitor and understand how Parkinson’s progresses. This will ultimately help improve diagnosis of the condition as well as inform the development of new treatments.

Trialling new treatments and therapies

Studies like these are known as clinical trials and involve changing something or adding something new to your usual day to day activity, management or treatment of Parkinson’s. They aim to test whether this change improves the health and quality of life of the people taking part in the study.

Examples might include taking part in a research study looking at a particular physical activity programme, or assessing a new device, or taking a new drug treatment.

This type of research is often more complex and can have rules about who can take part. This makes sure that the research is done safely and has the best chance of success. It often involves half of the participants randomly and unknowingly receiving a placebo, a dummy medication, device or less intense therapy. This is important, as it helps researchers work out if any changes or benefits are caused by the new treatment, and not something else.

"I have Parkinson’s and was able to take part in a clinical trial for a new medication last year that involved 9 days and overnight stays at a clinic. I found it very worthwhile and provides hope for the future for people with Parkinson’s."

Trial participant

What’s in it for me?

Many people who take part in research tell us it gives them a feeling of control over what they are experiencing.

In some research you will get to spend time with experienced healthcare professionals, giving you the chance to discuss your own situation in more detail.

You’ll contribute to a better understanding Parkinson’s. And help researchers get closer to finding better treatments and a cure, as well as improving current care. The more diverse the study group, the more research will reflect the experiences of everyone in the Parkinson’s community.

How will I know what to expect?

You will always get an information sheet to read and a consent form to sign before any research activity happens. This will include information on reimbursing any expenses for things like travel.

All research studies looking for people to take part have gone through a review process. Your data will remain confidential and used in line with the latest data protection requirements.

You can stop taking part at any point.

If you have any questions, you can get in touch with the researchers leading the particular study.

How can I find research to take part in?

You can search for our complete list of studies looking for people to take part on our website.

Search your postcode through our Take Part Hub to find research you can do from home or that’s happening near you. You can apply filters to find studies that are most relevant to you.

Once you’ve found something interesting, you can contact the researcher or take part directly by completing a research questionnaire.

Let the opportunities come to you

If you want to hear about opportunities directly by email, the Parkinson’s UK Research Support Network (RSN) is a great place to sign up to. You will receive monthly updates on research news, events and opportunities to take part in research. The featured opportunities cover a wide range of different types of research, and need people with and sometimes without Parkinson’s to take part.

"As a carer to my husband who has had Parkinson’s for over 40 years, I have been a member of the RSN since its inception and find it invaluable for keeping up-to-date with the latest research projects and findings. It has also enabled me to take part in quite a few studies, locally in person and remotely online."

RSN Member

Clinical research needs you!

Clinical research can only happen because of the goodwill of people taking part. Without people like you, progress in Parkinson’s research wouldn’t be possible.

We understand more about the condition than ever before. But we need to continue to accelerate knowledge and use research to move closer to the treatments, devices and therapies that are so desperately needed.