Non-profits in Neurodegenerative Space Publish Paper on Working Across Diseases

Representatives from more than a half-dozen non-profits worked together on a paper published in the Journal of Parkinson's Disease in August 2024, highlighting collaboration across the neurodegenerative disease space. The authors detail efforts to bring together perspectives from stakeholders ranging from regulators to patients.

The paper centers around the development of a biological staging system for "Neuronal alpha-Synuclein Disease" (NSD), which includes Parkinson's disease (PD). NSD is an important research concept that acknowledges that aggregation of alpha-synuclein is common across clinical phenotypes. Other "synucleinopathies," like dementia with Lewy bodies (DLB), also feature that biological hallmark of PD. New biomarker tools to measure this common pathology creates the opportunity for non-profits representing various neurodegenerative diseases to work together toward joint goals, such as finding therapies that target misfolded alpha-synuclein.

The organizations behind the paper were able to bring together researchers, clinicians, drug developers, regulatory agencies, affected individuals and additional non-profits to discuss the staging system for research, leading to important input from different perspectives.

As the field continues to move forward to test and implement biologic definitions of disease and the current NSD staging framework in clinical trials, the manuscript's enduring legacy is the value of bringing together diverse stakeholders from different backgrounds.

Authors on the paper come from seven different organizations representing PD and DLB, with an additional seven working alongside them in the coalition.

Paper authors include:

• Critical Path for Parkinson's Consortium
• Cure Parkinson's
• Lewy Body Dementia Association
• The Michael J. Fox Foundation for Parkinson's Research
• Parkinson Canada
• Parkinson's UK
• Shake It Up Australia Foundation

Additional Coalition Members Include:

• Alzheimer's Association
• American Parkinson Disease Association
• Cure Parkinson's New Zealand
• CurePSP
• Mission MSA
• Parkinson's Europe
• Parkinson's Foundation

The paper concludes:

Parkinson's advocate Michael J. Fox said 'The answers we want aren't going to fall out of the sky. We have to get ladders and climb up and get them.' Our coalition believes we must start climbing now because patients and families are waiting for better treatments.

• David Kumbroch

  Senior Science Writer