Ten Years of Data on Studies of Age-Related Eye
Disease Now Available to Researchers
Looked at progression of age-related macular
degeneration and age-related cataract in 4,757 older adults
Nov.
11, 2008 - Ten 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, has been released by the
National Eye Institute (NEI). Researchers 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, which is, part of the National Institutes of Health (NIH).
"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
Medicines 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 at
http://ccr.coriell.org/Sections/Collections/AREDS/?SsId=68.
"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 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.
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