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.

ODSHI Programs and Projects

ODSHI supports scientific discovery, collaborative research, and  public health improvement through scientific data and knowledge management in the vision research.

NEI AMD Integrative Biology Initiative 

NEI is taking the first important steps to correlate phenotypes, genotypes, and imaging information in the newly created AMD Integrative Biology Initiative.  Learn more

Data Sharing

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

NIH Common Data Elements (CDE) Repository

The NIH Common Data Elements (CDE) Repository has been 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.

NEI logo

National Eye Institute Data Commons

A central source for NEI biomedical digital objects including data sets, software and analytical workflow, metadata, standards, and  publications.

Age Related Macular Degeneration

Age-Related Macular Degeneration (AMD) Integrative Biology Initiative

Age-related macular degeneration (AMD) is the leading cause of vision loss in the US. It affects more than 9 million people and these numbers are likely to reach epidemic proportions in the coming decade. It is thought that the disease originates in a monolayer of pigmented epithelium cells located in the back of the eye - the retinal pigment epithelium (RPE). RPE performs multiple functions that are fundamentally important for the health and integrity of photoreceptors, including regulation of nutrient and metabolite flow, regeneration of visual pigment, and phagocytosis of shed photoreceptor outer segments. Consequently, RPE dysfunction or atrophy leads to photoreceptor cell death and vision loss, as seen in AMD patients. Genome-wide association studies have identified multiple (approximately 40) risk alleles associated with AMD and these risk-alleles affect different RPE signaling pathways whose dysregulation cause AMD progression.  Thus, the 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.  We hope that this approach guides researchers to the development of personalized therapies for AMD.


National Ophthalmic Disease Genotyping and Phenotyping Network (eyeGENE®)

The core mission of eyeGENE® is to facilitate research into the causes and mechanisms of rare inherited eye diseases and accelerate pathways to treatments.

ODSHI Contacts

Kerry Goetz

Syed Haqqani

Kerry Goetz
Associate Director

Syed Umair Haqqani
Health Science Policy Analyst

Last updated: May 20, 2021