Foundation Fighting Blindness Registry - My Retina Tracker Genetic Testing Study

  • Maldonado, Ramiro (PI)

Grants and Contracts Details


ABSTRACT Foundation Fighting Blindness Registry Objectives 2.1 Collect participant reported disease and lifestyle data from individuals affected by Inherited Retinal Degenerative Diseases (IRDDs), and affected family members, diagnosed by a qualified medical professional. 2.2 Enable participants to maintain a Retinal Health Profile that facilitates disease and lifestyle management and enhances interaction with their Retinal Healthcare Providers (RHP). 2.3 Provide a well curated database that enables researchers to identify potential participants, through access to a de-identified subset of data, for research studies by phenotype and genotype, and supports cross-disease research that will facilitate, and accelerate, genetic discoveries and the translation of those discoveries into therapies that improve clinical practice. 2.4 Establish a list of biosamples contributed by participants to existing, or new, biobanks or collections (including the type of sample collected and location). 2.5 Establish a list of participants who consent to be re-contacted by the FFB Registry coordinator when FFB authorized researchers studying IRDDs need new biosamples for these studies. Note: Participants must agree to provide new biosamples and complete study specific consent prior to any sample collection. 3.0
Effective start/end date10/1/214/30/22


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