University of Iowa launches Project 3000

Iowa City, IA-The University of Iowa is launching Project 3000 in an effort to identify all 3,000 U.S. men, women, and children who have Leber's congenital amaurosis (LCA).

To accomplish this, the project will offer genetic testing to identify individuals through its John and Marcia Carver Nonprofit Genetic Testing Laboratory. Philanthropic donations will reduce the cost of tests for families who lack health insurance.

LCA is an inherited form of blindness that becomes apparent shortly after birth. In recent years, it has been discovered that at least nine genes are known to cause about 65% of all cases. Project leaders say that research is so new that many individuals with the disorder are unaware that testing exists to identify the genes.

The project also aims to provide hope to individuals with the disorder and provide accurate information to families with the diagnosis. By collecting basic clinical information from those with LCA, doctors will be able to learn how each genetic subtype of LCA behaves over time to counsel patients better.

The project also aims to find cures by identifying patients with each genetic subtype so treatments may be tested as they become available. And project leaders hope to demonstrate to insurance companies the value in paying for genetic testing for LCA.

The research effort is being supported by the Center for Bioinformatics and Computational Biology, a joint research unit of the UI College of Engineering and Carver College of Medicine.

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