Abstract
My Retina Tracker™ is a new on-line registry for people affected with inherited orphan retinal degenerative diseases, and their unaffected, genetic relatives. Created and supported by the Foundation Fighting Blindness, it is an international resource designed to capture the disease from the perspective of the registry participant and their retinal health care providers. The registry operates under an Institutional Review Board (IRB)-approved protocol and allows sharing of de-identified data with participants, researchers and clinicians. All participants sign an informed consent that includes selecting which data they wish to share. There is no minimum age of participation. Guardians must sign on behalf of minors, and children between the ages of 12 to 17 also sign an informed assent. Participants may compare their disease to others in the registry using graphical interpretations of the aggregate registry data. Researchers and clinicians have two levels of access. The first provides an interface to interrogate all data fields registrants have agreed to share based on their answers in the IRB informed consent. The second provides a route to contact people in the registry who may be eligible for studies or trials, through the Foundation.
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References
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Acknowledgments
The establishment of My Retina Tracker was supported in part by the Department of Defense Telemedicine and Advanced Technology Research Center (TATRC) under the Inherited Retinal Degenerative Disease Clinical Trial Network award number W81XHW-09–2-0189 to the Foundation Fighting Blindness Clinical Research Institute. Views and opinions of, and endorsements by the author(s) do not reflect those of the US Army or the Department of Defense. Other funding was provided by the Foundation Fighting Blindness.
We thank the registry advisory team for their invaluable input; the American Foundation for the Blind (AFB) Technical Evaluation Services for software testing and guidance to ensure compatibility with the assistive reading software products; and Russell Bromley of TRA Consulting for assistance in development and implementation.
We thank Stephen Rose, Amy Laster, Annette Hinkle, and Patricia Zilliox for critical reading of the manuscript.
JKF and BCM are employees of the Foundation Fighting Blindness, a 501(c)(3) organization that established and supports My Retina Tracker.
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© 2016 Springer International Publishing Switzerland
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Fisher, J., Bromley, R., Mansfield, B. (2016). My Retina Tracker™: An On-line International Registry for People Affected with Inherited Orphan Retinal Degenerative Diseases and their Genetic Relatives - A New Resource. In: Bowes Rickman, C., LaVail, M., Anderson, R., Grimm, C., Hollyfield, J., Ash, J. (eds) Retinal Degenerative Diseases. Advances in Experimental Medicine and Biology, vol 854. Springer, Cham. https://doi.org/10.1007/978-3-319-17121-0_33
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DOI: https://doi.org/10.1007/978-3-319-17121-0_33
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