Project 3000
Ophthalmologists Needed to Identify Patients with Leber's Congenital Amaurosis (LCA)
The Ophthalmologist's Role
The major goal of Project 3000 is to get in contact with all 3,000 individuals affected with Leber's Congenital Amaurosis (LCA) in the United States and offer them state-of-the-art genetic testing to identify the specific genetic cause of their disease. Help is needed from ophthalmologists throughout the country to identify these individuals.
The Project 3000 team believes that the patients' physician must remain at the center of their medical care. Thus, all individuals interested in participating in the project will be encouraged to do so through their existing physician. Please refer any past, current, and future LCA patients to the Project 3000 team at (866) 495-2873. You may also contact Heather Scherber of the 1st Touch Foundation at hscherber@1sttouch.org or (916) 212-0312.
The Project 3000 Story
Leber's Congenital Amaurosis (LCA) is a rare blinding eye disease that affects one in 100,000 children. Project 3000 was launched whtn Chicago Cubs first baseman Derrek Lee and Boston Celtics CEO and co-owner Wyc Grousbeck, each of whom has a child with LCA, sought a partnership with The University of Iowa to advance scientific understanding of the disease and work toward a cure. The University of Iowa is an international leader in vision research and care, with particular stregth in inherited eye diseases. How the Project Will be Accomplished A critical step toward a cure for LCA is to identify the genes that cause it. Nine genes have been identified so far. Scientists believe that at least six more are et to be discovered.
Project 3000's first phase is to identify everyone in the country with LCA, and use genetic testing to confirm clinical diagnoses of the disease. These genetic tests will help identify the remaining genes linked to LCA.
How the Genetic Testing Will be Done
As people with LCA are identified, the University of Iowa John and Marcia Carver Nonprofit Genetic Testing Laboratory will be ready to perform genetic testing. Anyone who requests the test will be tested regardless of ability to pay. Individuals do not need to travel. Blood samples can be taken by a local physician and shipped to the University.
The Significance of Project 3000
This is the first time that genetic testing for any eye disease has been offered to every affected person in the nation. At present, many insurance companies are unfamiliar with the benefits of genetic testing for LCA. The University of Iowa Carver Laboratory has developed an extensive data bank of genetic information on eye diseases that is unique in its scope. Building on this data bank will expedite the process of identifying the remaining genes and facilitate clincial trials for treatments with the potential to restore sight. Project 3000 intends to demonstrate the value of testing to physicians and insurance firms nationwide so that it will become part of the "standard of care" for LCA. While Project 3000 specifically targets LCA, the implications are much broader. Success with LCA can serve as a model for other genetic diseases, in ways that transcend ophthalmology.
More Information
1st Touch Foundation - Project 3000 Information
Project 3000 Website
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