Parkinson’s UK is nonprofit organization striving to help Parkinson’s disease research continue amidst this global pandemic. Their goal is to get clinical research, and specifically studies that necessitate patients participating in-person, back up and running as soon as possible. As a part of this effort, they have created a survey for patients, families, and caregivers to share their perspective on what they would be comfortable with and what would be most convenient for them at this time. Safety is the most important variable.
Ultimately, research is for patients and patients are a necessity for completing successful research. Therefore, patient input is of paramount importance.
This survey will ask questions about participating in a study during COVID-19 as well as different adaptations for studies in response to such. More specifically, questions focus on the following topics:
- Comfort with participating in a current study
- Factors that would make someone more comfortable with having a researcher visit their home
- Factors that would make someone willing to participate in a study that takes place in a clinical setting
- Willingness to participate in a study at home that requires technology (ex: video conferencing)
- Willingness to do a finger-prick at home
Of course every clinical trial will be different. But by understanding general attitudes, each study can be shaped to best suit the needs of the research and of the patient.
The study should only take 20 minutes and it is anonymous.
The deadline to complete the survey is August 30th. Take it here.
After the survey deadline has passed, a public report will be released showcasing the survey’s findings.
Clinical trials won’t look like they used to this coming year. Current studies are in the process of being adapted and newly emerging studies are being planned differently than they would have been in the past.
In this process of deciding how to structure future research, the patient opinion is essential.
You can read more about this survey here.