National Eye Institute Launches Data Portal for Macular Degeneration Research

The National Eye Institute (NEI) Data Commons now enables researchers to access data from patients with macular degeneration who participated in the Age-Related Eye Disease Study 2 (AREDS2). The database complements newly available stem cell lines created by the New York Stem Cell Foundation Research Institute (NYSCF) from blood cells of AREDS2 study participants. Together, these resources will accelerate the discovery of therapies for age-related macular degeneration (AMD) and other blinding conditions.

The NEI and the NYSCF will host a joint webinar on March 30 to introduce the new NEI AMD Integrative Biology Initiative data portal, housed within the NEI Data Commons. The NEI is part of the National Institutes of Health.

“With the addition of AREDS2 data, the NEI Data Commons now includes data on thousands of participants with AMD. The new portal enables researchers to make the greatest use of this fantastic trove of information,” said Steven Becker, PhD, director of the NEI Office of Regenerative Medicine.

AMD affects the light-sensing retina in the back of the eye and is a leading cause of vision loss and blindness among older adults. Both genes and environmental factors such as diet and smoking affect AMD risk. Effective prevention and treatment strategies are lacking for some types of AMD.

AREDS2 included participants with a variety of genetic profiles, including genes that increase or decrease AMD risk. An NEI collaboration with NYSCF has generated induced pluripotent stem cell lines from a spectrum of AREDS2 participants. With these cells, researchers will be able to create human disease-relevant models with a variety of genetic backgrounds to better understand how genes contribute to AMD.

Currently, 60 induced pluripotent stem cell lines are available through the NYSCF repository. Accompanying genomic and phenotypic data will be available to the research community in the coming months. Additional stem cell lines with their AMD-related mutations corrected will be available by the end of the year.

Anonymized AREDS2 data are available to researchers for analysis within the NEI Data Commons portal or for download. The system includes data on participants’ diet, eye health, and genetics. The system will soon house AREDS2 retinal images, and already includes data from rare genetic eye diseases such as retinitis pigmentosa and Stargardt disease, and from the Patient Reported Outcomes with LASIK study. NEI plans to add data from future clinical trials.

To access datasets in the NEI Data Commons, researchers submit a research proposal for review and sign a data use agreement. After their study is complete, users contribute their research data to the database. Access to the stem cell lines requires a separate material transfer agreement with NYSCF.

“Providing clinical data through the NEI Data Commons will help us expand the utility of our clinical trial data and streamline research,” said Kerry Goetz, administrator of the NEI Data Commons. “Our system is user-friendly and requires no extensive coding knowledge.”

Edited by Gary Cramer