Project 3000 aims to answer questions related to Leber's congenital amaurosis

Iowa City, IA-The University of Iowa has launched Project 3000 to identify the estimated 3,000 men, women, and children in the United States who have Leber’s congenital amaurosis (LCA).

Edwin M. Stone, MD, PhD, holder of the Seamans-Hauser Chair in Molecular Ophthalmology at the university’s Roy J. and Lucille A. Carver College of Medicine, where the project will be based, said he believes the project will become a model for attacking dozens of other vision-impairing diseases.

At least nine different genes are known to cause about 65% of all cases of LCA. Project 3000 will collect clinical and genetic information from those who have the congential defect in an effort to identify additional genes related to LCA and provide those in whom the defect had been diagnosed recently with more accurate information about what they can expect.

Genetic testing for any eye disease will be offered to every participant. Philanthropic donations will be available to help reduce the cost of the tests for those lacking health insurance. The project will aim to make genetic testing the insurer-covered standard of care for LCA.

Patients also will participate in trials of new treatments for LCA, with the goal of finding cures for the disease.

Derrek Lee, Chicago Cubs first baseman, and Wyc Grousbeck, chief executive officer and co-owner of the Boston Celtics, both have children with LCA and will be involved with the project.