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NEI Office of Data Science and Health Informatics

Harnessing the power of data in vision research


NEI collects human data through clinical studies and trials in both its intramural and extramural divisions. Human data are notable for their complexity and lack of interoperability. Yet these data are used for the treatment of the patient from whom they derive. It is important to recognize and characterize the different types of health and healthcare data in order to articulate coherent and complete research questions and to develop treatment methodologies for blinding eye diseases and visual impairment. This Office of Data Science and Health Informatics (ODSHI) coordinates existing activities within the NEI and across NIH and provide a nidus for new trans-agency programs in data collection, data sharing and data interoperability. ODSHI works to accelerate scientific discovery, foster collaborative research, and ultimately improve public health through the application of scientific data and knowledge management in the eye health sciences.

Data Sharing

NEI is dedicated to accelerating vision research by sharing impactful data.

National Ophthalmic Disease Genotyping and Phenotyping Network (eyeGENE®)

Facilitates research into the causes and mechanisms of rare inherited eye diseases and accelerate pathways to treatments. Learn more

Age-Related Macular Degeneration (AMD) Integrative Biology Initiative

Seeks a more precise description of AMD disease pathobiology by using AMD genetic risk factors as sentinels for specific RPE signaling pathways and for changes in RPE physiology. Learn more

National Eye Institute Data Commons

Offers a central source for NEI biomedical digital objects including data sets, software and analytical workflow, metadata, standards, and publications. Learn more

NIH Common Data Elements (CDE) Repository

Designed to provide access to structured human and machine-readable definitions of data elements that have been recommended or required by NIH Institutes and Centers and other organizations for use in research and for other purposes. Learn more


Common Data Elements: Standardizing data collection

This course from the National Library of Medicine® is about making data collection and data sharing easier using common data elements (CDEs). Learn more

ODSHI Contacts

Kerry Goetz

Syed Haqqani

Reed, Amberlynn

Kerry Goetz
Associate Director

Syed Umair Haqqani
Health Science
Policy Analyst

Amber Reed
Program Specialist

Last updated: January 12, 2022