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Colin's story

 

Contents

Why I’m involved in research

Colin Sanders (pictured above) was diagnosed with Parkinson’s in 1999. He’s part of our Research Support Network and is passionate about supporting progress towards a cure. He talks below about his involvement in research.

“In 2002, I became a lay grant reviewer for Parkinson’s UK. This is a group of people affected by Parkinson’s who review research grant applications and report back to the Research Advisory Panel, giving their personal opinion on the value and importance of each application.

“Lay grant reviewers are part of the Research Support Network. Through the network, anyone can get involved in supporting research. Members of the network participate in studies and share their experience of living with Parkinson’s to help researchers.

Meeting the scientists

“I never thought that, 10 years after first getting involved, I’d be sitting around a table with some of the people whose grant applications I’ve reviewed “But, in October 2011, I went to my first DeNDRoN Parkinson’s clinical study group meeting. DeNDRoN is the Dementias and Neurodegenerative Disease Research Network, funded by the Department of Health.

I feel I can play my part in finding a cure.”

“The clinical study group’s main function is to generate and develop new research projects, and to provide support for these projects, where necessary. And, to quote DeNDRoN, ‘patients, carers and the wider public have a strong voice in DeNDRoN. A vital source of expertise comes from people affected by the dementias and neurodegenerative conditions.’

The remit

“So what exactly does DeNDRoN do? DeNDRoN supports the development, set-up and delivery of randomised controlled trials (the ‘gold standard’ for the design of clinical trials), in dementia and neurodegenerative conditions. It also helps to recruit participants to studies. Most interestingly, as far as we’re concerned, it supports the active involvement of patients and carers in all parts of the research process.

“Attending DeNDRoN meetings gives me a fantastic insight into the diverse range of studies that are currently underway. I was pleasantly surprised to learn that there are almost 40 Parkinson’s studies in place at present, under the DeNDRoN banner. These include genetic research, as well as studies exploring exercise and drug treatments.

Why not get involved?

“By being actively involved with Parkinson’s UK and the Research Support Network, I feel I can play my part in finding a cure. Every little bit helps.

“In the past five years, the number of people taking part in dementia and neurodegenerative conditions clinical research has grown from 2,000 patients in 2006 to around 14,000 in 2011. Why not be one of them?”

To find out about taking part in research or about our Research Support Network, call 020 7963 9376, email rsn@parkinsons.org.uk or see parkinsons.org.uk/researchsupportnetwork