Getting Started With Parkinson’s Disease Data
Welcome
Getting Started With Parkinson’s Disease Data
Welcome to the Getting Started With Parkinson’s Disease Data guide! This comprehensive resource is designed to help researchers navigate and access major Parkinson’s disease research datasets with ease.
Purpose
Don’t Panic! This guide is intended to be a living document which enables researchers getting started with an array of datasets pertaining to PD research to do so with increased ease. The current draft contains information on four datasets:
- AMP PD - Accelerating Medicines Partnership Parkinson’s Disease
- PPMI - Parkinson’s Progression Markers Initiative
- GP2 - Global Parkinson’s Genetics Program
- FOX INSIGHT - Online longitudinal clinical study
What’s Inside
Each dataset entry contains an overview of the following aspects:
- Study Description - Background and scope of the dataset
- Study Data Features - Types of data available (clinical, genomic, imaging, etc.)
- How to Access Data - Step-by-step instructions for gaining access
- Intended Data Uses - Primary research goals and applications
- Data Set Strengths - Key advantages and unique features
- Data Set Limitations - Important constraints to consider
- Pre-Existing Documentation/FAQs - Links to additional resources
- Tips and Dataset Considerations - Practical advice for working with the data
- Updates - Information on data refresh schedules
At-a-Glance Comparison
The guide provides a comprehensive metatable enabling researchers to quickly gain insight as to which dataset might be worth exploring further to determine what data best fits their research purpose. The comparison includes:
- Overview of cohort sizes
- Types of analyses supported
- Modalities of data available
- Types of clinical features present
How to Use This Guide
- Start with the Overview to compare datasets at a glance
- Dive into individual dataset chapters for detailed information
- Follow the access instructions to request data
- Refer to the Additional Resources for more information
Contributing
If you are interested in contributing an entry on a new study, or to request an update or correction, please contact: researchcommunity@michaeljfox.org
Acknowledgements
This guide is created by the Data Community of Practice and powered by The Michael J. Fox Foundation for Parkinson’s Research.
Version 1.0 - May 2024
This is a living document and will be updated regularly as new information becomes available and datasets evolve.