A survey of people with Parkinson’s, their carers and loved ones has shown that the majority are still comfortable taking part in research.
548 responses have shaped guidance aimed at researchers. It will help them adapt their studies to ensure the safety and comfort of people with Parkinson's during the coronavirus (COVID-19) pandemic.
Face-to-face research studies are restarting, where safe to do so, after many were paused or delayed due to the coronavirus pandemic. But it's crucial that people taking part in research, and the staff carrying out the studies, feel safe and comfortable to continue this vital work.
A Parkinson’s UK survey in August gathered views from people with Parkinson’s and their loved ones about how to make research participation safe and comfortable now, and in the near future.
Top survey results
We asked if people would feel comfortable taking part in a research study at present, or in the near future. 91% of people said they would feel comfortable.
One survey respondent said:
"I think it is important that research gets up and running again as soon as possible."
We also asked where people would be happy taking part in research. Respondents were most comfortable with the idea of home visits or visiting a research centre or clinic that was separate from a hospital.
Another survey respondent said:
"A study centre or university would be OK. But I'd be very cautious about visiting a hospital at the moment."
The survey allowed people to suggest or comment on additional measures that would make them feel comfortable during a research visit, beyond the standard recommendations such as wearing face masks and social distancing. This information was used to develop recommendations for everyone involved in the design and delivery of face-to-face research.
Download the full report and recommendations (PDF, 664KB)
Dr Natasha Ratcliffe, Research Involvement Manager at Parkinson’s UK, said:
"We know that the research community has been working tirelessly to get studies up and running again in a way that is safe for everyone involved. Clinical research has to look different now, and the Parkinson's community must work together to figure out what adaptations need to be made to ensure Parkinson's research can continue.
"This report offers insight into what people affected by the condition want to see from research studies. We hope that those involved in the design and delivery of research will work with people affected by Parkinson's to build on the information in this report as they plan and carry out clinical research."