A report
from NIH working group calls for big data and interdisciplinary practice to
help patients with age-related macular degeneration.
July 31, 2019 - Improving
collaboration between specialists and integrating multiple datasets to leverage
big data will be key for advancing research for dry age-related macular
degeneration (AMD), according to a new report from a National Institute of
Health (NIH) working group.
Over 11 million
people in the United States are diagnosed with AMD, an eye disease that
ultimately results in blindness. It is the leading cause of blindness among
individuals 65 years of age and older.
The disease can
manifest in one of two forms: neovascular (wet) or non-neovascular (dry). While
the neovascular form progresses more rapidly, there are several known and
proven treatments for the disease. There are no preventive measures for dry AMD
nor treatment options.
“The working group
thoroughly assessed what is known about dry AMD pathobiology, and the
recommendations will be informative for considering future NEI research
priorities to align with promising pathways for discovering therapeutic
targets,” said Director of National Eye Institute (NEI), Paul Sieving, MD, PhD,
in an earlier news release.
The working group
recommended a systems biology approach to disease treatment, an integration of
genomic, preclinical, medical, pharmacological, and clinical data to inform
modeling of the disease progression. Synthesizing big data from all these areas
including tissue samples from clinical trials will help inform predictive
modeling which can then be used to inform individual patient care.
A personalized approach to disease
management may also be helpful, the working group recommended. Such an approach
should consider the disease stage, progression, and individual risk factors to
provide preventive and treatment strategies specific to the patient, the report
said. Collaborating will all points of care will allow a multidisciplinary team
to use a patient’s unique clinical, imaging, and genomic data to treat the
disease.
“We propose that
researchers utilize a systems biology approach, integrating the big data
available from clinical registries and various fields of biology known as
‘omics’ to develop better models and ultimately treatments for patients with
this blinding disease,” stated report co-author Joan W. Miller, MD.
Due to a lack of
preventive strategies and treatment options for dry AMD, the working group
noted the need for improved understanding of the disease pathology and promoted
clinical trial investigations to do so. Previous research has shown a genetic
link to the disease as well as several lifestyle factors including smoking, but
there is no work examining the effects these factors have on dry AMD.
A better
understanding of how these factors impact the disease will help providers be
better informed to watch for risk factors and promote inventive preventive
strategies. Such understanding only comes from examining data and promoting the
use of big, integrated data sources to help investigators use multiple sources
to answer their questions.
Effective disease
management will need multiple targets that differ based on the disease stage
progression, the report notes. A strategy overhaul needs to take place that
focuses on large-scale, collaborative, systems biology in order to effectively
treat the disease.
“This approach would
integrate basic, genomic, pre-clinical, medical, pharmacological, and clinical
data into mathematical models of pathological processes at different stages of
dry AMD in order to ask how relevant individual components act together within
the living system,” Miller said.
The working group was
appointed by the National Advisory Eye Council, a 12-member panel that
establishes guidelines for the NEI under the NIH. The group was charged with a
multilayered goal: to raise public health awareness about the impact of dry
AMD, review the current state of research about the disease for a better
understanding of its pathology, propose future research directions, encourage
scientists to focus on AMD, and promote collaboration among a network of
specialized providers.
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