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NEI Releases Complete Data from Age-Related Eye Disease Study

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The National Eye Institute (NEI), part of the National Institutes of Health (NIH), announces the release of more than 10 years of data collected during the Age-Related Eye Disease Study (AREDS), which looked at the progression of age-related macular degeneration and age-related cataract in 4,757 adults aged 55 to 80.
Researchers around the world can apply for access to this complete set of medical history records and clinical trial results as well as select genetic information to gain a better understanding of two complicated vision conditions that affect aging adults.
"This vast pool of data is now at the fingertips of scientists, which is an unprecedented occurrence in the field of ophthalmology," said Frederick L. Ferris III, M.D., clinical director of the NEI. "Now that the entire AREDS database is available to the global research community, we hope that researchers will be inspired to delve more deeply into analyzing the genetic and environmental factors involved in the onset and progression of age-related macular degeneration and age-related cataract."
The AREDS data are accessible through the online database of Genotypes and Phenotypes, known as dbGaP, which archives and distributes data from studies that explore the relationships between genetic variations (genotypes) and observable traits (phenotypes).
The NEI-supported AREDS was one of two studies included in the December 2006 launch of dbGaP. The National Library of Medicine's National Center for Biotechnology Information (NCBI) created and operates dbGaP, which includes two levels of access. Study descriptions and documents such as protocols can be found in the public, open-access section.
In the controlled-access section, approved researchers can view genotype and phenotype data from individual AREDS participants, though the information is coded to protect patients' identities.
The first version of controlled-access AREDS data became available through dbGaP in June 2007. It included selected phenotypic data and information gathered from a genome-wide scan of DNA samples collected from 600 AREDS participants.
The updated version now incorporates the complete information obtained from all 4,757 AREDS participants during trial enrollment and follow-up visits, including data from photographs of the patients' eyes and information regarding their nutritional intake, quality of life, and rates of illness and death.