Newcastle researchers are looking for people with and without Parkinson’s to take part in a simple study that can be done at home.
The Parkinson’s Progression Markers Initiative (PPMI) is a global study which aims to better understand how brain disease begins and changes over time.
Around 166,000 people live with Parkinson’s in the UK. Emerging research suggests that a prolonged loss of smell could indicate a risk of developing the condition, but scientists do not know why this happens.
To help scientists learn more about this risk and to develop new treatments, people are being encouraged to participate in a simple scratch and sniff test.
The test takes around 15 minutes to complete and can be done at home. Participants answer a few short questions, and the test is posted out to them.
People can take part in the smell test if:
- They are aged 40 and over and do not have Parkinson’s disease. The test can be ordered online.
- Have been diagnosed with Parkinson’s in the last seven years. The test can be ordered online.
- May have a condition called REM sleep behaviour disorder which can be an early sign of brain disease risk, especially when you also have a reduced sense of smell. The test can be ordered online.
Eligible participants may be invited to take part in further research and can decide if they would like to be involved.
For those who do not meet the above criteria, there is still an option to take part in a large online study (PPMI Online) if they are aged 18 and over and living in the UK.
PPMI online participants will have to periodically answer to questionnaires (20 minutes every 6 months) on their lifestyle to help identify risk factors for Parkinson’s and other neurodegenerative disease. In the USA, over 40000 people have already joined PPMI Online.
In the UK, PPMI is led by Professor Nicola Pavese, a consultant neurologist at the Royal Victoria Infirmary and director of the Clinical Ageing Research Unit.
Prof. Pavese, who is also a professor of clinical neuroscience at Newcastle University, said:
“Many conditions, such as Covid-19 or a common cold, can cause loss of smell, however a prolonged loss of smell might be a risk factor for developing brain disease, such as Parkinson’s.
“Not everyone with smell loss will go on to develop brain disease, however we need to learn more about this connection to find effective treatments.
“Everyone who gets involved in the study is helping us to move a step closer to finding treatments for a condition that can have a huge impact on patients and their families.”
PPMI was launched by The Michael J.Fox Foundation in 2010 with scientists and industry partners. It has since engaged thousands of partners and study volunteers — to build a cornerstone of Parkinson’s research.
Analysis from its open-access data set and available biosample library has deepened understanding of disease and informed design of dozens of therapeutic trials.
