The CRISP (Community for Research Involvement and Support by people with Parkinson’s) Patient Participation and Involvement (PPI) group, founded by and based at King’s College Hospital (KCH), recently celebrated their tenth anniversary since launching in 2011.
CRISP is the first PPI group in the UK that assists scientists in Parkinson’s disease-related research. CRISP has played a key role in the initiation and development of many clinical research projects, including the now-globally used King’s PD Pain Scale.
To mark their tenth anniversary, CRISP members were joined by researchers from King’s College Hospital and King’s College London for an evening of talks.
CRISP clinical lead and KCH Neuroscience Research Manager, Dr Alex Rizos and Professor K Ray Chaudhuri, Neurologist at KCH and Professor in Movement Disorders at King’s College London, provided a whistle-stop tour of CRISP’s involvement in Parkinson’s research. They, highlighted Crisp’s advisory role in research that has investigated Parkinson’s effect on the gastrointestinal system and how activities such as ballet can support people to live well with the condition.
CRISP members also shared their personal stories of Parkinson’s disease and how involvement with research and CRISP had impacted their lives.
CRISP member John discussed the trauma of his mother’s diagnosis of Parkinson’s disease when he was young yet. John was invited to join CRISP due to his previous career in academia and has since participated in a number of studies. He concluded his talk by stating that he was on a happier journey than the one he had envisioned based on his childhood experiences.
To conclude the talks, KCH Head of Research & Innovation Ann-Marie Murtagh and Clinical Research Network PPI manager Neha Modha both emphasised the importance of the patient voice for informing the direction of research and inspiring researchers to continue improving patients’ lives.
After the event, CRISP members Eros and Karen spoke to guests about their reasons for getting involved and how it had impacted their lives.
Eros was diagnosed with Parkinson’s disease in 2004 and is a founding member of CRISP: “I was honoured when Professor Chaudhuri asked me if I’d like to join the group, explaining it was like a sounding board for new developments and research. The most exciting thing we’ve done is working on the Parkinson’s Pain Scale. It’s used all over the world! If you’re interested in getting involved in research projects in this way, it’s never too late.”
Like Eros, Karen also found out about the CRISP group from Professor Chaudhuri. Diagnosed in 2010, Karen has now been part of CRISP for nine years and said: “I was interested in research as you find out much more about the disease. Researchers often ask us to look at their research and ask us for ideas, for example to help make a questionnaire more user-friendly for particpents. Being part of CRISP gives you hope for the future and what may come about – that’s the main thing. Personally, I’m excited about genetic research and individual therapies.”