We have been advised by Parkinson’s UK about a couple of opportunities to participate in research:
1. What is important to measure in swallowing treatments for people with Parkinson’s?
A PhD student at Trinity College Dublin wants to know what is most important to people with Parkinson’s who experience swallowing difficulties, and their carers, when deciding if a swallowing treatment works. They will use this information to develop a set of outcomes that future researchers can use to see what impact a new swallowing treatments has. An outcome can be something like a “change to quality of life” or “severity of swallowing difficulty”.
Who do the researchers need?
200 people who:
o have Parkinson’s and experience swallowing difficulties or,
o care for a person with Parkinson’s who experiences swallowing difficulties or,
o are a healthcare professional working with people with Parkinson’s who experience swallowing difficulties
What is involved?
Filling out 3 online surveys over a 5 month period
o Each survey will take around 15 minutes to complete
o You will be notified by email when it is time to complete each new survey
For more information, please read the participant information sheet
Interested in taking part?
You can access the survey by clicking on this link.
Please contact Julia Hirschwald by phone at +353 1 896 2382 or by email at cosdip.tcd@gmail.com if you have any further questions. The deadline for taking part in this research is 30 January 2024.
2. Parkinson’s and Movement Disorders Families Project (PFP)
Researchers at University College London are investigating the links between changes in genes and Parkinson’s or other movement disorders to help develop new and improved treatments.
Who do the researcher’s need?
• 2400 people with Parkinson’s, or another movement disorder, who have either:
o developed the condition before the age of 45,
o or have a family history of other family members with the condition,
o or who carry a known gene change associated with the condition
What is involved?
You will be invited to your nearest study centre to give consent and donate a blood sample. The blood sample will then be screened for changes in any genes that are linked to Parkinson’s, or other movement disorders.
You may also be asked to complete questionnaires and other assessments of your movement.
For more information, please read the participant information sheet
How do I get involved?
The deadline for taking part in this research is 1 January 2030.
If you have any questions please contact the study coordinator at ion.pdresearch@ucl.ac.uk
For both of these, and other information on research, please visit the Parkinson’s UK Take Part Hub
