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FAQ's eyeGENE®

>General FAQ | Health Care Providers FAQ | Patients FAQ


Health Care Providers


Question: Is there a limit to the number of samples I can send to the eyeGENE® Network?

If you anticipate enrolling more than 10 patients per year in eyeGENE®, you must submit the eyeGENE® protocol to either your local IRB, or if you do not have a local IRB, a commercial one. Once your IRB approves the eyeGENE® protocol, you will become part of the Network. One benefit to being part of eyeGENE® is that you (and any associate investigator you list on your protocol) may submit an unlimited amount of patient samples for genetic testing at any time, for any ophthalmic disease being tested by the Network.

If you anticipate recruiting 10 or fewer patients per year, eyeGENE® does not require you to submit the protocol to an IRB; however, you should check with your local institution regarding its requirements and regulations.


Question: What is the turnaround time for sample testing?

Turnaround time varies depending on the gene(s) tested. On average, it takes the Network 4 to 12 months to carry out testing, but it may take longer. Please note that the turnaround time is computed from the time all the required documentation is received and online data requirements are met. DNA samples will not be sent for diagnostic testing until (1) sufficient clinical information has been entered into the online database, and (2) signed and completed consent forms have been received by the eyeGENE® Coordinating Center. Incomplete forms or incomplete clinical data will add to the turnaround time. There are also some diagnoses that eyeGENE® is not able to provide testing for. Please review the information on Genes and Diseases or contact the Coordinating Center for specifics.


Question: Is someone available to walk my staff through the eyeGENE® registration process?

eyeGENE® staff is available to provide database training, troubleshooting, and to answer any questions you may have that are related to the program. You may reach them at 301-435-3032 or eyegeneinfo@nei.nih.gov


Question: Will I be given opportunities to collaborate on research projects involving my patients and/or their data if I submit my patients to eyeGENE® for diagnostic testing?

Yes. The NEI and the eyeGENE Steering Committee are very sensitive to this issue. Referring eye health care providers may indicate that they are interested in collaborating on research studies, case reports, etc. when appropriate.


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Department of Health and Human Services NIH, the National Institutes of Health USA.gov