The public, including patients, can and should be involved in all aspects of research, including study design, communication, and ethics. Patients bring unique knowledge and skills to projects, which can improve the quality of research. The Innovative Medicines Initiative encourages public and patient involvement (PPI) in all of its projects. PD-MitoQUANT is fortunate to have two people with Parkinson’s involved in the project through our patient advocacy partner Parkinson’s UK. Here, we meet Paula Scurfield. Paula was diagnosed with Parkinson’s in March 2014 and is the fourth person in her family to have the condition. Before retirement 10 years ago, Paula worked as a geography teacher and part-time university lecturer in Hong Kong, Washington DC, Beijing, the Maldives, and the UK. She believes that volunteering and taking part in clinical trials is empowering, enabling her to meet the challenges of living with an incurable neurodegenerative disorder head-on. When not travelling, [...]
PD-MitoQUANT is fortunate to have two people with Parkinson’s, Richard Campbell and Paula Scurfield, involved in the project through our patient advocacy partner Parkinson’s UK (www.parkinsons.org.uk). Recently, Richard wrote a blog entitled “Getting involved in an international research project on Parkinson’s”. "Paula Scurfield and I are part of the Parkinson’s UK Research Support Network and have joined the project as patient and public representatives. Our role is to advise on how information about the project is communicated, and how findings are shared with the Parkinson’s community and the public. I became interested in the research because of its more basic science approach to Parkinson’s. There are many opportunities to take part in research testing new drugs and treatments for Parkinson’s, including on-line surveys. However, this was an opportunity to look in detail at some of the possible causes of the condition in terms of genetics, cell structure and organisation, and the early [...]
Congratulations to our partners at the Centre National de la Recherche Scientifique (CNRS) for their March 17, 2020, open-access paper published in Scientific Reports. The paper entitled "The expression level of alpha-synuclein in different neuronal populations is the primary determinant of its prion-like seeding" was authored by Josquin Courte, Luc Bousset, Ysander Von Boxberg, Catherine Villard, Ronald Melki & Jean-Michel Peyrin. Find the entire list of PD-MitoQUANT acknowledged papers here: https://www.pdmitoquant.eu/publications/
The 'Parkison's Research in Ireland' event planned for Wednesday, 1st April 2020 has been cancelled and will be re-scheduled for a later date.
The open-access study titled: Differential Membrane Binding and Seeding of Distinct α-Synuclein Fibrillar Polymorphs published by the team consisting of AN Shrivastava, Luc Bousset, M Renner, V Redeker, J Savistchenko, A Triller and Ronald Melki was recently published in the Biophysical Journal on the 27th of January 2020. Congratulations to the whole team! See the growing list of PD-MitoQUANT-acknowledged publications here: https://www.pdmitoquant.eu/publications