Introduction: The Parkinson's Puzzle
Imagine trying to solve a jigsaw puzzle with millions of pieces, where most pieces are hidden in different laboratories around the world, and no one is sharing what they have. This has been the challenge of Parkinson's disease research for decades—until now.
Parkinson's, the fastest-growing neurodegenerative disease worldwide, affects more than 10 million people globally, with numbers expected to double by 2040 1 . Patients experience not just the characteristic tremors and movement difficulties, but often a devastating array of non-motor symptoms including sleep disturbances, cognitive decline, and autonomic nervous system dysfunction 2 .
The biological complexity of Parkinson's has long frustrated researchers. From the accumulation of alpha-synuclein protein to mitochondrial dysfunction, from genetic risk factors to environmental triggers, the disease manifests differently across patients, making it exceptionally difficult to understand and treat.
But a revolutionary approach is transforming this landscape: open science. By breaking down traditional barriers between laboratories and institutions, open science is accelerating the pace of discovery in unprecedented ways.
Parkinson's By The Numbers
Parkinson's is the fastest growing neurological disorder worldwide 1 .
What Is Open Science and Why Does It Matter for Parkinson's?
- Siloed research efforts
- Data guarded until publication
- Duplication of effort
- Slowed progress
- Collaborative research networks
- Immediate data sharing
- Resource democratization
- Standardized protocols
ASAP has embraced these principles wholeheartedly, requiring that all funded research makes manuscripts publicly available on preprint servers, shares datasets and protocols immediately, and distributes research tools without restrictive licensing 2 . This approach is transforming how Parkinson's research is conducted on a global scale.
The ASAP Initiative: A Case Study in Open Science
Collaborative Research Network
35
International Teams
Nearly 400 researchers working across disciplines and institutions 3
Major Open Science Initiatives in Parkinson's Research
| Initiative | Lead Organization | Key Objectives | Impact to Date |
|---|---|---|---|
| ASAP CRN | Aligning Science Across Parkinson's | Fund collaborative teams addressing high-priority research questions | 35 teams, nearly 400 researchers investigating PD mechanisms |
| GP2 | ASAP/NIH | Genotype 150,000+ volunteers from diverse populations | Expanding understanding of genetic architecture across ancestries |
| PPMI | The Michael J. Fox Foundation | Longitudinal study of 4,000+ participants to identify biomarkers | Data downloaded 6+ million times; enabled αSyn-SAA development |
| CRN Cloud/ABC Atlas | ASAP/Allen Institute | Visualize and explore data from millions of human brain cells | 9.4+ million cells available, including 3 million from PD patients |
A Deep Dive into a Key Open Science Experiment: The Allen Institute Collaboration
The Methodology: Mapping the Parkinson's Brain at Single-Cell Resolution
One of the most exciting examples of open science in action is the collaboration between ASAP and the Allen Institute announced in July 2025 1 5 . This project aims to create a comprehensive brain cell atlas that includes data from people with Parkinson's disease—the first effort of its kind.
Sample Collection
Postmortem brain tissue from 9 different brain regions of individuals with Parkinson's disease and healthy controls
Single-Cell Sequencing
Advanced genomic techniques to sequence RNA from individual brain cells
Data Integration
3 million human Parkinson's cells integrated with 6.4 million existing cells in the ABC Atlas 1
Standardization
Common cellular reference framework developed by the NIH BRAIN Initiative
Visualization Tools
Sophisticated tools for exploring data across brain regions, cell types, and disease states
Brain Cell Atlas Statistics
Key Findings from the ASAP-Allen Institute Brain Cell Atlas Collaboration
| Discovery Category | Specific Finding | Research Implications |
|---|---|---|
| Cellular Vulnerability | Identification of previously unknown neuronal subtypes affected in PD | New targets for therapeutic protection |
| Inflammatory Changes | Microglial activation patterns differ between PD and Alzheimer's | Suggests disease-specific neuroimmune responses |
| Regional Susceptibility | Certain brain regions show earlier molecular changes | Could enable earlier diagnosis and intervention |
| Co-pathology Insights | Shared patterns of protein aggregation across diseases | May explain clinical overlaps between neurodegenerative conditions |
The Importance of a Common Language
Historically, one of the major challenges in comparing findings across laboratories has been the lack of standardized cell type classification. Different research groups might use different markers and names for what could be the same cell population, creating confusion and slowing progress. The ABC Atlas establishes a common reference framework—much like the periodic table in chemistry or the genetic code in biology—that allows researchers everywhere to use the same terminology and classification system 5 .
This standardization is particularly valuable for understanding the relationships between different neurodegenerative diseases. Parkinson's, Alzheimer's, Lewy body dementia, and other conditions share overlapping symptoms and biological features. The ABC Atlas allows researchers to ask whether similar cell types are affected across these diseases, potentially revealing common pathways that could be targeted therapeutically.
The Scientist's Toolkit: Essential Research Reagent Solutions
Open science isn't just about data—it's also about ensuring that researchers have access to the high-quality tools and reagents needed to conduct their work. The Michael J. Fox Foundation's Research Tools Program has been instrumental in developing and distributing these resources 6 .
Essential Research Reagents for Parkinson's Science
| Tool Type | Specific Examples | Research Applications | Access Information |
|---|---|---|---|
| Antibodies | Anti-phospho-Rab10; LRRK2 antibodies | Target engagement assays; pathological assessment | Available through MJFF Tools Catalog |
| Preclinical Models | Genetic rodent models; iPSC lines | Therapeutic screening; disease mechanism studies | Available through Jackson Laboratory, Taconic |
| Viral Vectors | AAV vectors for gene delivery | Target validation; gene therapy approaches | Distributed via academic cores and commercial repositories |
| Biomarker Assays | α-synuclein SAA kits | Patient stratification; clinical trial outcomes | Available through multiple diagnostic companies |
Resource Availability
The MJFF catalog contains more than 100 laboratory resources that are made available to researchers at low cost through partnerships with vendors 7 .
Success Story
One particularly successful example is the anti-phospho-Rab10 antibody, developed through MJFF's coordination in 2018. This reagent has enabled multiple research projects and is now part of an assay used in clinical trials to measure whether LRRK2-inhibiting drugs are properly engaging their target 7 .
The Human Dimension: Patients and Advocates in Open Science
Open science extends beyond researchers to include patients and advocates as essential partners in the scientific process. The 2025 CRN Collaborative Meeting highlighted this commitment, featuring presentations from people living with Parkinson's who shared their experiences and perspectives 3 .
"This collaboration unlocks powerful new opportunities, giving researchers access to high-value datasets that could transform our understanding of Parkinson's and other neurodegenerative diseases."
Patient Engagement Highlights
- Patrick Morrissey rowed the "World's Toughest Row" raising over $41 million for Parkinson's research
- Ethan Henderson shared his journey as a patient, caregiver, and advocate
- A father's Parkinson's symptoms temporarily disappeared while playing the piano
Return of Results Programs
Initiatives like PPMI have also strengthened their return of results programs, providing participants with access to their own research data (such as genetic information or imaging results) along with counseling support to help understand these findings 4 . This approach recognizes that research participants are not merely subjects, but partners in the scientific process.
Conclusion: The Future of Open Science in Parkinson's Research
The open science movement is transforming Parkinson's research at every level—from basic laboratory studies to large-scale genetic initiatives to clinical trials. By breaking down barriers between disciplines, institutions, and even between researchers and patients, this approach is accelerating our understanding of a devastatingly complex disease.
Progress Achieved
Comprehensive resources like the brain cell atlas, genotyping of diverse populations, and standardized tools
Challenges Ahead
Technical hurdles in data integration, cultural barriers to sharing, sustainable funding models
Future Outlook
Collaboration replacing competition, sharing accelerating discovery, faster progress for patients
"When we launched the CRN Cloud platform in 2024, we set out to turn data from scarce patient brain samples into a catalyst for discovery" — Ekemini Riley, Managing Director of ASAP 1 .
This catalyst is now igniting a new era in Parkinson's research, one where collaboration replaces competition, and sharing accelerates discovery. For the millions of people living with Parkinson's worldwide, these changes can't come soon enough—but thanks to open science, they're now arriving faster than ever before.