The Impact of Data Sharing: Transforming How Researchers Tackle Some of the World's Hardest Health Problems

Data sharing has already transformed how researchers tackle some of the world's hardest health problems from Parkinson's disease to childhood malnutrition to drug-resistant malaria. Not all of these case studies are affiliated with the Alzheimer's Disease Data Initiative, but they show what's possible when researchers pool data at scale. The AD Data Initiative is building the network to bring that same power to Alzheimer's disease and related dementias (ADRD) research.

Predicting the Currently Unpredictable: The Parkinson's Progression Markers Initiative (PPMI)

Launched in 2010 and sponsored by The Michael J. Fox Foundation, PPMI built one of the largest longitudinal biomarker datasets in Parkinson's research by getting investigators to agree to rapid, large-scale data sharing from the start. The resulting dataset has been downloaded more than 50 million times worldwide and continues to expand today.

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The Global Neurodegeneration Proteomics Consortium (GNPC): How the AD Workbench Powers the World’s Largest Protein Biomarker Discovery Effort

Co-funded by Gates Ventures and Johnson & Johnson, the GNPC united researchers from two dozen leading institutions to build the largest protein biomarker discovery effort for neurodegenerative disease ever assembled 300 million unique protein measurements from 40,000 biofluid samples across AD, Parkinson's, ALS, and FTD. By hosting the resulting harmonized dataset on AD Workbench, the AD Data Initiative enabled secure consortium-wide collaboration, free compute access, and public availability at a scale no single institution could support alone.

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Using Big Data to Help Children Thrive: The Human Birth, Growth, and Developing Knowledge Integration (Ki) Initiative: Using Big Data to Help Children Thrive

Created in 2014, the Ki initiative gathered "abandoned" data from 420 completed clinical and population studies across 50 countries to better understand childhood wasting and stunting. By convincing researchers to share data that had never been reused, Ki turned isolated studies into a much clearer global picture of child growth and development.

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Data Detectives Track Emerging Drug Resistance: WorldWide Antimalarial Resistance Network (WWARN)

Founded in 2009, WWARN built a global database to track the spread of antimalarial drug resistance after early efforts to simply ask researchers to share data failed. Its repository now holds more than 180,000 individual patient data files from roughly 600 databases, freely available for reuse by the global malaria research community.

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