Webinar: A deeper look at young onset Parkinson’s
Held in partnership with the University of Edinburgh and the Journal of Parkinson’s Disease, with Edinburgh University’s Professor Tilo Kunath as chair, this edition of our Parkinson’s webinar series focused on YOPD.
On average, people with Parkinson’s are diagnosed around age 60; about 5-10% of people with Parkinson’s, however, are diagnosed before the age of 50. Those who fall into this category are considered to have young onset Parkinson’s disease (YOPD). Although people living with YOPD share many of the motor and nonmotor symptoms consistent with Parkinson’s, they may experience differences in symptom progression and presentation, and are more likely to carry a genetic risk factor. Additionally, they face unique challenges due to the stage of life when they are diagnosed.
In this webinar, Professor Tilo Kunath from Edinburgh University was joined by an expert panel to discuss what YOPD is and how it presents, as well as the potential genetic links. Furthermore, the panel explored research opportunities for people with YOPD.
The recording for this webinar is now available.
Additional takeways from this discussion
- Young onset Parkinson’s (YOPD; also called early onset Parkinson’s) is defined as individuals diagnosed with Parkinson’s at age 50 or younger.
- Symptoms and progression can be different for people with YOPD than those diagnosed later. For example, progression is often slower for people with YOPD, and instances of Parkinson’s dementia and loss of smell are lower. Constipation and depression, however, may be more common symptoms.
- Due to age of diagnosis and differences in symptoms and progression, people with YOPD face unique life challenges.
- Genetic variations are generally more common the younger someone with Parkinson’s is diagnosed. People with YOPD may decide to get genetic testing, but this should be a personal decision.
- Along with trial opportunities, there are many other ways to get involved in research, such as joining a trial steering committee or advisory council.
Meet our panellists
Dr Connie Marras is a Professor of Neurology at the University of Toronto and movement disorders neurologist at the University Health Network, Toronto, Canada. Dr Marras also currently serves as the chair for the Movement Disorders Society task force for Genetic Nomenclature and Parkinson’s subtypes, as well as sitting on the steering committee for the Early onset PD study group. Her research focus is on understanding Parkinson’s epidemiology and genetics, as well as improving prognosis and assessment tools for the condition.
Professor Vincenzo Bonifati is a Professor in Genetics of Movement Disorders at Erasmus University Rotterdam, The Netherlands. His research focuses on understanding the underlying biology of Parkinson’s and identifying genetic variants that drive the onset and progression of the condition.
Dr Samantha Cole is the CEO of Spotlight YOPD – a UK charity for people with YOPD – and a clinical health psychologist. Diagnosed with YOPD in 2023, she is interested in wellbeing and promoting approaches that support health outcomes and improve quality of life for those with YOPD.
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Spotlight YOPD
Spotlight YOPD is a UK charity founded by and for people with YOPD. Learn more about YOPD and the work they do by visiting their website.
