Patient Registry

My Retina Tracker™, an International Registry for Individuals and Families Affected by Retinal Degenerative Disease
My Retina Tracker™ - available at www.MyRetinaTracker.org - is an expanded version of the Foundation Fighting Blindness supported registry for people with inherited retinal diseases.  
 
My Retina Tracker features
  • direct on-line access for participants that provides the ability for individuals to enter, store, retrieve, review, update and change their information and disease status at any time
  • surveys that will help participants build a personal retinal health record that includes information that may be useful to themselves, their doctors and to researchers
  • a “Notes” feature that allows a participant to record their own observations about the progression of their disease
  • an “Attachments” feature where electronic attachments, including scanned images and electronic files, can be easily attached to your account – a place to organize and keep important information such as clinical summaries and records
  • a de-identified Family ID that allows related participants to signify they are part of a particular family group, without revealing their identities 
  • a clinical portal that can allow a physician to enter clinical data into the participant’s registry record, if invited by the participant 
  • a dashboard that allows participants to see, in graphical representations, how their information compares to everyone else in My Retina Tracker, anonymously, of course
Confidentiality and protection of identifiable health information is a top priority.  My Retina Tracker was designed with state-of-the-art electronic security to protect participant privacy and ensure ease of use.*  Participants control what they include and what they share, but their identity is never revealed.
 
All participants are assigned a unique Registry ID.  Only the Foundation’s Registry staff will have the ability to link a person’s Registry ID to their name.  They will only do this when it is important to communicate with the participant.
 
Each participant is guided through a consent process that allows them to decide how their data can be used.  Selections can be changed at any time.  
 
My Retina Tracker also enables qualified retinal researchers from around the world the ability to mine “de-identified” disease data records that may help them better understand retinal conditions and how to treat them.  De-identified data has had all personal health identifiers removed, and there is no reasonable basis to believe that the information researchers can see could be used to identify a person.
 
My Retina Tracker may also be used by investigators looking to accelerate enrollment in clinical trials who demonstrate to the Registry Oversight Committee that they have a scientifically valid, IRB approved study protocol.  Once approved, these investigators can search the database and identify the Registry ID numbers of people matching their needs.  The staff will then decode the number, and inform that participant how to contact the clinician if they are interested in the trial.  Participant names will never be given to researchers directly. 
 
Who Can Join? 
  • Any person with an orphan inherited retinal degenerative disease (IRD) 
  • Any unaffected person who is genetically related to a person with an IRD 
  • Children and adults – there is no minimum age. Minors under 18 should be registered by a parent or guardian. 
How to Join: 
There are two ways to join: 
  1. On-line at the website www.MyRetinaTracker.org
  2. By contacting the registry coordinator and requesting a paper copy of the new registry data collection form 
*Although every reasonable effort has been taken, confidentiality during actual internet communication procedures cannot be guaranteed.  No guarantees can be made regarding the interception of data sent via the internet by any third parties.