Access to diverse datasets is a major barrier in neurodegeneration research, slowing progress in understanding for diseases like Alzheimer’s and Parkinson’s. Existing datasets are often scattered across different platforms, difficult to find, or too small to produce meaningful insights.
Priority 1 will bridge this gap by systematically mapping available datasets, expanding access to digitized brain tissue, and improving tools for remote data analysis. Additionally, Priority 1 will fund new data collection projects that are highly representative of the global neurodegenerative patient population.
Specifically, Priority 1 will encompass the following programs:
Data Landscaping Program to map and catalog available neurodegeneration research data. This program will support the creation of a Data Librarian Service Desk to help researchers find the data they need. The catalog will be regularly updated to guide future data collection efforts.
Digital Brain Banking Program to digitize at least 5,000 neuropathology cases. This program will make critical brain tissue images more accessible for research.
Federated Data Analysis Program to allow researchers to analyze data remotely and securely. We will collaborate with key experts to drive the adoption of these tools across the research community.
New Datasets Funding Program to ensure the creation of 2-4 major datasets annually covering all types of neurodegeneration patient populations and are available for global research.
The programs in Priority 1 will transform data accessibility, helping researchers to uncover new insights and develop urgently needed treatments faster.
