All researchers interested in accessing clinical data, genetic analysis data, and DNA samples from eyeGENE® must submit a proposal for approval from the eyeGENE® Resource Access Subcommittee (eGRASC).
Contact the eyeGENE Coordinating Center for Application Forms at firstname.lastname@example.org.
Access requests may be completed through electronic submission or through hard copy mail and includes the following:
- An eyeGENE® Access Application (SF 424 R&R, Biographical Sketch and Research Plan) The application documents should include a descriptive title for the proposed project and a description of the types of information sought. The proposal must state how samples will be used, detailed description of the proposed project including a project time-line, and description of secondary distribution (if any). The Biographical Sketch should be no longer than 4 pages and the Research Plan must not exceed 3 pages.
- eyeGENE® Material Transfer Agreement for Access to Biomaterials and/or Data. This document outlines the terms and conditions for use of eyeGENE® Data and Materials. It must be completed and a final copy filed at the NEI’s Technology Transfer Office before eyeGENE® Data and/or Materials will be distributed. Please refer to separate instructions for completion of the MTA.
Proposals should be accompanied by proof of Institutional Review Board (IRB) approval or exemption. The eGRASC may review an application and provide provisional access for the materials contingent on IRB approval or exemption.
- Requests for access to only BRICS
- Requests for access to both BRICS and DNA samples
- Requests to contact interested participants for independent research and/or treatment studies
The Principal Investigator will be required to submit an annual progress reports. Details are outlined in the eyeGENE User Agreement / Material Transfer Agreement.
To continue to offer high quality information, especially when dealing with the rare disease populations within the eyeGENE® biorepository, all data resulting from research analyses of eyeGENE® resources is required to be returned to the eyeGENE® Coordinating Center. The NEI expects approved Investigators to share information generated to the fullest extent possible with the eyeGENE® Coordinating Center and the vision community. If full data sharing is not possible, the Investigator must provide an appropriate explanation. The ability to share, and the quality of the data resulting from a study, may be considered by the eyeGENE® Resource Access Subcommittee as part of the approval decision. Please include details of a data sharing plan in the Research Plan. Data pending publication may be delayed release.