The first participant has been recruited to a pioneering Parkinson’s UK-funded clinical trial for people with a sleep behaviour disorder who have a higher risk of developing Parkinson’s.
The trial is investigating a drug called PXS-4728 in people with isolated rapid eye movement sleep behaviour disorder (iRBD). Joe, the first of 40 participants, has successfully entered the study and received his first dose of either the active medication or the placebo (a dummy medication that looks like the real thing). It's a double blind trial, meaning both researchers and participants don’t know who is receiving the active medication and who is taking a placebo. This makes sure the results are as objective as possible.
What’s iRBD got to do with Parkinson’s?
Previous research has identified that the development of iRBD, where people act out their dreams, increases people’s risk of developing Parkinson’s. A recent study found that over 70% of iRBD patients went on to develop Parkinson’s or a similar neurological condition over 12 years.
Joe describes what it’s like to live with iRBD:
"I depend on my wife telling me of my restlessness and sometimes violent outbursts that have resulted in injury to her, myself and a few broken windows. I now have to make sure I have a 'safe sleeping environment' to help reduce the risks of any damage done to myself, my wife and my surroundings."
What’s the aim of the study?
This study hopes to preserve brain cells by targeting inflammation in the brain of people with this specific sleep disorder that is associated with the risk of developing Parkinson's in the future. The trial will look at levels of inflammation before and after treatment by using a special brain scan technique. The hope is the drug could help slow or even prevent the progression of Parkinson’s.
"Having the opportunity of being part of a research study that could help increase the medical and general knowledge of one of the possible causes/connections to Parkinson’s is my motivation to take part."
He also shares that he was not aware of the link between the sleep disorder and Parkinson’s until recently.
"There could be many people whose sleep is 'disturbed' but are unaware they may have iRBD and if so the possible link to Parkinson’s. I hope that this study and those participating in it will help to increase the public awareness of this."
The study is being led by a company called Syntara, previously known as Pharmaxis. It is working with researchers and iRBD patients from the University of Sydney and the University of Oxford. Joe is taking part in Australia and it’s hoped that the UK part of the study will start early 2024.
This study is funded by the Parkinson’s Virtual Biotech, the international drug discovery and development programme founded by Parkinson’s UK. Read the funding announcement.
Results of the trial are expected by mid 2025.