We received some information about studies looking for research participants. Two of the studies required visits to hospitals (Manchester and Bristol), so we haven’t shared the details. However there is an online study that we thought might suit more of our members.
Supporting your family to make decisions about research participation on your behalf
When someone with Parkinson’s is unable to make their own decision about taking part in a research study, their families may be asked to decide on their behalf. However, some family members do not know what the person’s preferences about research would be and they can find it difficult to make a decision.
The aim of this research is to explore thoughts about advance research planning, a process which would allow an individual to specify whether they would like to be involved in future research. This research could help to ensure that more people have the opportunity to take part in and benefit from research.
Researchers at Cardiff University are exploring what might need to happen or be put in place to support families through advance research planning – a process where someone can express their wishes about being involved in research studies in the future should they experience memory deterioration. They are looking for people affected by Parkinson’s to take part.
Who do the researchers need?
100 people affected by Parkinson’s, or any other condition that may affect memory, including carers and loved ones.
What is involved?
You will be asked to complete an online survey, which will take approximately 10 minutes to complete.
For more information please read the participant information sheet.
Interested in taking part?
Find the survey link on the Take Part Hub before 28 February 2023.
If you have any questions before participating, please contact Victoria Shepherd by email at Shepherdvl1@cardiff.ac.uk or phone at 029 2068 7641.