title: My Retina Tracker™: An On-line International Registry for People Affected with Inherited Orphan Retinal Degenerative Diseases and their Genetic Relatives - A New Resource.
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.
authors.affiliation: Foundation Fighting Blindness, 7168 Columbia Gateway Drive, Suite 100, 21046-3256, Columbia, MD, USA. Jfisher@fightblindness.org.
authors.forename: Joan K
authors.initials: JK
authors.lastname: Fisher
authors.affiliation: Translational Research Acceleration Consulting, 93465, Templeton, CA, USA. russellbromley@gmail.com.
authors.forename: Russell L
authors.initials: RL
authors.lastname: Bromley
authors.affiliation: Foundation Fighting Blindness, 7168 Columbia Gateway Drive, Suite 100, 21046-3256, Columbia, MD, USA. bmansfield@fightblindness.org.
authors.forename: Brian C
authors.initials: BC
authors.lastname: Mansfield
mesh_terms: D001766:Blindness / Q000175:diagnosis / Q000517:prevention & control* / Q000628:therapy; D006801:Humans; D016247:Information Storage and Retrieval / Q000379:methods; D007391:International Cooperation; D038622:Internationality; D009862:Online Systems; D010820:Physicians; D012042:Registries / Q000706:statistics & numerical data*; D012108:Research Personnel; D012162:Retinal Degeneration / Q000175:diagnosis / Q000517:prevention & control* / Q000628:therapy
keywords: Clinical data; Database; Longitudinal data; Natural history; Prevalence; Registry; Retinal degeneration; Retinitis pigmentosa; Stargardt disease; Usher syndrome