Open Access News

News from the open access movement


Monday, November 10, 2008

OA to eye disease data

NEI Releases Complete Data from Age-Related Eye Disease Study, press release, November 10, 2008.

The National Eye Institute (NEI), part of the [U.S.] 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. ...

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. ... 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. ...

The public, open-access AREDS data can be viewed on the dbGaP website at [here]. Researchers can find a link to the application for controlled access to individual-level data on the same site.

More information about AREDS (NCT00000145) can be found at [here].

See also our past posts on dbGaP.