NIH expanded a genetic and clinical research database to give researchers access to the first digital study images. The National Eye Institute (NEI) in collaboration with the National Center for Biotechnology Information (NCBI) has made available more than 72,000 lens photographs and fundus photographs of the back of the eye. The photographs were collected from the participants of the Age-Related Eye Disease Study (AREDS).
These images are accessible to scientists through NCBI’s online database of Genotypes and Phenotypes known as dbGaP. This database has data available from studies that explore the relationship between genetic variations (genotype) and observable traits (Phenotype). However, for researchers to use the information, they first must apply for controlled access to de-identified information about study subjects, including the new images.
“The availability of AREDS images through dbGaP may transform the way vision research is conducted,” said NEI Director Paul A. Sieving, M.D., Ph.D. “Scientists will be able to increase their understanding of the impact of genetics and gene-environment interactions on blinding eye disease progression, and this knowledge could aid in diagnosis and in developing effective treatments.”
AREDS began in 1992 as a multi-center prospective study designed to evaluate the progression of age-related macular degeneration and age-related cataracts. Participants 55 to 80 when the study started also were enrolled in a clinical trial using high-dose vitamin and mineral supplements.
Study participants were followed for a median of 6.5 years during the trial and five years after the study ended. Beginning in 1998, DNA was also isolated from blood samples obtained from more than 3,700 AREDS participants.
“AREDA has been the main focus of the translational research program at NEI for a number of years,” said NEI Clinical Director Frederick L. Ferris III, M.D. “This new group of lens and fundus images from well described study participants provides a new opportunity for vision research and is a valuable resource for clinical teaching and training as well.”
Open-access to AREDS data and the link to click to apply for controlled access to individual-level data, including the new images, can be found on the NEI-AREDS study page at www.ncbi.nlm.nih.gov/gap.