NEI Releases Complete Data from Age-Related
Eye Disease Study
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.
"Providing this new set of AREDS data through dbGaP will
benefit researchers worldwide who are investigating genetic factors
in age-related macular degeneration and other conditions," said
David Lipman, M.D., director of the NCBI. "AREDS was one of
two founding studies in dbGaP, and its availability over the last
year and a half has enabled many research teams to conduct their
own analyses of these important data. We are delighted to have
received, and to make available, this even more extensive set of
data, further enhancing the possibilities for research and discovery."
AREDS began in 1992 as a long-term, multi-center, prospective
study designed to evaluate the progression of age-related macular
degeneration and age-related cataract. Participants were also enrolled
in a clinical trial of high-dose vitamin and mineral supplements.
They were followed for a median of 6.5 years during the trial and
an additional five years after the trial’s conclusion.
In addition, DNA was isolated from blood samples taken from more
than 3,700 AREDS participants beginning in 1998. DNA from many of
these participants is currently being stored in the NEI-AREDS Genetic
Repository. Access to these DNA samples for research purposes is
available for a fee through the Coriell Institute for Medical Research
"Genetic testing has become crucial in the advancement of
science, both for understanding the progression of diseases and
for determining appropriate research directions for treatments," said
Paul A. Sieving, M.D., Ph.D., director of the NEI. "With the
AREDS data available through dbGaP, vision researchers can continue
to identify genetic factors that may play a role in eye conditions
such as age-related macular degeneration and cataract."
The public, open-access AREDS data can be viewed on the dbGaP
website at http://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?study_id=phs000001.v2.p1. 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 www.clinicaltrials.gov.
The National Eye Institute (NEI), a component of the National
Institutes of Health, is the federal government's lead agency for
vision research that leads to sight-saving treatments and plays
a key role in reducing visual impairment and blindness. For more
information, visit the NEI Web site at www.nei.nih.gov.
The National Center for Biotechnology Information (NCBI) was established
in 1988 as a national resource for molecular biology information.
NCBI creates public databases, conducts research in computational
biology, develops software tools for analyzing molecular and genomic
data, and disseminates biomedical information, all for the better
understanding of processes affecting human health and disease.
NCBI is a division of the National Library of Medicine, the world’s
largest library of the health sciences. For more information, visit www.nlm.nih.gov.
The National Institutes of Health (NIH) — The Nation's
Medical Research Agency — includes 27 Institutes and Centers
and is a component of the U.S. Department of Health and Human Services.
It is the primary federal agency for conducting and supporting basic,
clinical and translational medical research, and it investigates
the causes, treatments, and cures for both common and rare diseases.
For more information about NIH and its programs, visit www.nih.gov.