Sharing heterogeneous data: the national database for autism research

Area of Science:

• Neuroscience
• Genetics
• Developmental Psychology

Background:

• Autism spectrum disorder (ASD) research requires large, diverse datasets for robust analysis.
• Data silos and lack of standardized sharing hinder scientific progress in understanding ASD.
• The need for a centralized, secure repository for ASD research data is critical.

Purpose of the Study:

• To establish and maintain a secure data repository for autism spectrum disorder research.
• To facilitate data sharing and collaboration among ASD investigators.
• To accelerate scientific discovery through harmonized data and accessible research results.

Main Methods:

• Development of a secure online research data repository (NDAR).
• Implementation of data harmonization protocols for diverse datasets.
• Establishment of a portal for qualified investigators to access de-identified data.

Main Results:

• NDAR hosts data from over 25,000 research participants.
• A secure portal provides access to de-identified ASD research data for qualified investigators.
• Summary information about available data is publicly accessible.

Conclusions:

• The NDAR serves as a vital resource for the autism research community.
• Facilitating data sharing through NDAR promotes collaborative and accelerated scientific discovery in ASD.
• The repository supports the advancement of knowledge regarding autism spectrum disorder.