April 2025
Webinar – DBS surgery for Parkinson’s: the questions to ask
To conclude our awareness and knowledge-building campaign, Parkinson’s Europe will hold a webinar aimed at people with Parkinson’s and their family members who may want to know more about DBS surgery – it will be your chance to listen to others’ experiences and ask your own questions.
The webinar will be structured as a conversation among experts and will include the first-hand testimony of a person who has recently undergone DBS surgery – recounting her own experience and highlighting the questions people should ask their healthcare professionals on this topic. It will be moderated by Prof Alfonso Fasano (Professor of Neurology at the University of Toronto, Canada), and will feature as speakers:
- Dr Alexandra Boogers, DBS research fellow at Catholic University of Leuven, Belgium
- Prof Stephan Chabardès, Head of the neurosurgery department, Grenoble Alpes University Hospital, France
- Janette Sinclair, Board member of Parkinson’s Europe and Action Parkinson, Belgium
The webinar will take place on Thursday 24 April 2025 at 16.30-17.45 CEST. Click on the button below to register in advance!
We want to hear from you! Do you have questions for the speakers? Please send them to [email protected].
March 2025
Volunteer opportunities: join our new steering groups
We’re excited to to announce the formation of three new steering groups to help support our new strategy, focussing on our three strategic pillars: Data and Innovation, Empowerment, and Awareness and Visibility.
You can read role descriptions for each of the groups below. If you are interested in becoming a steering group representative, please email our Strategic Director, Amelia Hursey.
Role description: Data & Innovation Group
Role description: Empowerment Group
Role description: Awareness & Visibility Group
February 2025
New research paper: the “burden” of asking patients to complete PROM surveys in clinical trials
Our Strategic Director, Amelia Hursey, has co-authored a paper in ISPOR (The Professional Society for Health Economics and Outcomes Research) about how to reduce PROM burden. Titled Understanding and Addressing the “Burden” of Asking Patients to Complete Patient-Reported Outcome Measures in Clinical Trials, the paper explores the practice of asking patients to fill out questionnaires called Patient-Reported Outcome Measures (or PROMs) during clinical trials, giving details on how they perceive their condition, treatment or trial experiences, and suggests ways to make this process easier for people taking part.