Parkinson’s UK Opens Survey on Research Participation in Pandemic

Parkinson’s UK is asking patients and others in the community to take part in a survey about research participation in the wake of the COVID-19 pandemic, and possible adaptations for study environments.

The goal is to help researchers make sure that face-to-face studies restart in ways that are safe, practical, and convenient.

The survey is open to the U.K. Parkinson’s community — patients and their families, caregivers, and friends — through Sunday, Aug. 30.

“Clinical research will look different [than] before the pandemic, and as researchers look to make adaptations to existing studies and plan for new ones, it’s important that they take into account the views of people affected by Parkinson’s,” the nonprofit group states on a webpage.

Although each clinical trial will require adaptations specific to its needs, the survey is aimed at producing measures that can be applied across most studies. Ultimately, participation will help inform study design.

The 20-minute survey is anonymous, and asks for no identifying personal information. Once it has closed, Parkinson’s UK will produce a public report that details questionnaire findings and makes recommendations.

Survey questions include those addressing comfort levels with participation in current or near-term research studies, what would make a home visit from a researcher feel safe, what would make participation in a study that requires a visit to a clinical setting feel safe, comfort levels with carrying out study assessments at home using a computer or video conferencing, and openness to taking an at-home finger-prick blood test.

“The role of the patient has never been more important in advising how to avoid putting patients or researchers at risk, and also to keep costs in check,” a Parkinson’s UK research volunteer said in a press release. “Collaboration is essential to keep research progressing.”

Go here to start the survey. For more information, you can email Annie Amjad here.

Parkinson’s UK  also offers opportunities to participate in online research through its Take Part Hub.