Research Club

Patients are doing it for themselves

Research Club is an initiative to encourage and involve people with Parkinson's in research. But this is research with a twist. Rather than be mere subjects in projects designed by clinicians, people living with Parkinson's have the opportunity to participate in research designed by patients themselves. It's patient power from beginning to end. We decide what we want to study, we design the trial, we conduct the experiment, we collect the data and we discuss the meaning. The idea that patients can be active rather than passive and lead research rather than contribute to it is a sea change in the way in which Parkinson's research is conducted. It takes away the assumption that research is 'owned' by academic and pharmaceutical industry scientists and clinicians. Each Research Club Meeting involves between 10 - 30 people. To date there have been three events - click below to find out more.

RELATED ITEMS

  • WPC is the World Parkinson Congress and this year marks the fourth of these meetings. The first took place in Washington in 2006, moved to Glasgow for 2010, to Montréal in 2013 and this year comes to Portland (Oregon – not Maine). And there is every indication that this meeting…
  • Rallying to the Challenge 2016: Data, Data, Data  This year’s theme for Rallying to the Challenge was the issue of data:  big data, small data, personal data, impersonal data, what’s useful and what’s not, and how data could and should be used. Collecting information about our personal experiences can inspire…
  • The quiet revolution I think we all accept the notion that clinical trials are central to the development of new medicines and new treatments for Parkinson's. And it's also true that the majority of these will be conducted by the pharmaceutical industry or academic units. Both have a strong vested…