[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"trial:NCT02435940":3,"trial-entities:NCT02435940":136,"trial-summary:NCT02435940":156},{"id":4,"nct_id":4,"org_study_id":5,"brief_title":6,"official_title":7,"overall_status":8,"completion_date":9,"status_verified_date":10,"last_update_date":11,"start_date":12,"sponsor_name":13,"lead_sponsor_class":14,"has_dmc":15,"brief_summary":16,"detailed_description":17,"conditions":18,"keywords":47,"study_type":76,"primary_purpose":77,"phases":78,"enrollment_info":79,"interventions":82,"primary_outcomes":83,"secondary_outcomes":88,"sex":89,"minimum_age":77,"maximum_age":77,"healthy_volunteers":90,"eligibility_criteria":91,"std_ages":100,"locations":104,"central_contacts":123,"overall_officials":125,"references":128,"see_also_links":129},"NCT02435940","FFB-Registry-01","Inherited Retinal Degenerative Disease Registry","Foundation Fighting Blindness My Retina Tracker Registry","RECRUITING","2037-06","2026-05","2026-05-19","2014-06","Foundation Fighting Blindness","OTHER",false,"The My Retina Tracker® Registry is sponsored by the Foundation Fighting Blindness and is for people affected by one of the rare inherited retinal degenerative diseases studied by the Foundation. It is a patient-initiated registry accessible via a secure on-line portal at www.MyRetinaTracker.org. Affected individuals who register are guided to create a profile that captures their perspective on their retinal disease and its progress; family history; genetic testing results; preventive measures; general health and interest in participation in research studies. The participants may also choose to ask their clinician to add clinical measurements and results at each clinical visit. Participants are urged to update the information regularly to create longitudinal records of their disease, from their own perspective, and their clinical progress. The overall goals of the Registry are: to better understand the diversity within the inherited retinal degenerative diseases; to understand the prevalence of the different diseases and gene variants; to assist in the establishment of genotype-phenotype relationships; to help understand the natural history of the diseases; to help accelerate research and development of clinical trials for treatments; and to provide a tool to investigators that can assist with recruitment for research studies and clinical trials.","My Retina Tracker Registry provides two portals for data entry and review. Initial registration in the My Retina Tracker Registry is initiated by a participant, not a clinician. Using the participant portal, the participant establishes a username and password, is guided through on-line informed consent, and can then use an interactive guide to record their ophthalmic and family history, genotype and other subjective diagnosis-related and general health information. Drop-down menus and standardized vocabulary are used for database consistency. They may also attach documents, such as medical records, to maintain their personal medical files on their disease. Participants are encouraged to update their profiles regularly to create a longitudinal history of their disease. Participants can see aggregated data for all other participants in the registry and compare their own disease and status to others.\n\nAfter a profile has been established, Registry members may ask their clinician or genetic counselor to add specific ophthalmic exam and measurement results to the profile. This is done through the clinical portal which also uses a series of drop-down menus to expedite entry and standardize data. Clinicians cannot see the participant data when adding the clinical exam data. Participants are encouraged to collect this data at each medical exam, to create a longitudinal clinical data set.\n\nAccess to de-identified data or study recruitment assistance is available to qualified investigators who may inquire by contacting Coordinator@MyRetinaTracker.org. A process that maintains patient anonymity and privacy protection, exists for researchers with Institutional Review Board-approved projects who wish to contact registry participants of interest.",[19,20,21,22,23,24,25,26,27,28,29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46],"Eye Diseases Hereditary","Retinal Disease","Achromatopsia","Bardet-Biedl Syndrome","Bassen-Kornzweig Syndrome","Batten Disease","Best Disease","Choroidal Dystrophy","Choroideremia","Cone Dystrophy","Cone-Rod Dystrophy","Congenital Stationary Night Blindness","Enhanced S-Cone Syndrome","Fundus Albipunctatus","Goldmann-Favre Syndrome","Gyrate Atrophy","Juvenile Macular Degeneration","Kearns-Sayre Syndrome","Leber Congenital Amaurosis","Refsum Syndrome","Retinitis Pigmentosa","Retinitis Punctata Albescens","Retinoschisis","Rod-Cone Dystrophy","Rod Dystrophy","Rod Monochromacy","Stargardt Disease","Usher Syndrome",[48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64,65,66,67,68,69,70,71,72,73,74,75],"inherited retinal degenerative disease","retinitis pigmentosa","Usher","Leber","Bardet-Biedl","Batten","Best","cone dystrophy","cone-rod dystrophy","choroideremia","congenital night blindness","enhanced s-cone","cone monochromacy","Goldmann-Favre","Kearns-Sayre","Refsum","retinoschisis","rod-cone dystrophy","rod dystrophy","rod monochromacy","Sorsby pseudoinflammatory dystrophy","stargardt","achromatopsia","juvenile inherited macular degeneration","cone dichromacy","cone trichromacy","Charcot-Marie-Tooth","albipunctate dystrophy","OBSERVATIONAL",null,[],{"count":80,"type":81},20000,"ESTIMATED",[],[84],{"measure":85,"description":86,"timeFrame":87},"Number of Participants with Rare Diagnoses Within the Inherited Retinal Degenerative Disease Category as Defined by Clinical Evaluation","Participant profiles broken out by disease category and genetic diagnosis","Data collection is ongoing, up to 20 years.",[],"ALL",true,{"inclusion":92,"exclusion":94,"raw_text":99},[93],"Diagnosed with an inherited retinal degenerative disease OR",[95,96,97,98],"Glaucoma only","Diabetic retinopathy only","Non-retinal disease","Not heritable retinal disease","Inclusion Criteria:\n\n* Diagnosed with an inherited retinal degenerative disease OR\n\nExclusion Criteria:\n\n* Glaucoma only\n* Diabetic retinopathy only\n* Non-retinal disease\n* Not heritable retinal disease",[101,102,103],"CHILD","ADULT","OLDER_ADULT",[105],{"facility":13,"status":8,"city":106,"state":107,"zip":108,"country":109,"contacts":110,"geoPoint":120},"Columbia","Maryland","21045","United States",[111,117],{"name":112,"role":113,"phone":114,"phoneExt":115,"email":116},"Registry Coordinator","CONTACT","800-683-5555","1594","Coordinator@MyRetinaTracker.org",{"name":118,"role":119},"Todd Durham, PhD","PRINCIPAL_INVESTIGATOR",{"lat":121,"lon":122},39.24038,-76.83942,[124],{"name":112,"role":113,"phone":114,"phoneExt":115,"email":116},[126],{"name":118,"affiliation":127,"role":119},"Senior Vice President, Clinical and Outcomes Research",[],[130,133],{"label":131,"url":132},"On-line registration site for registry participants, clinicians and researchers","https:\u002F\u002Fwww.myretinatracker.org\u002F",{"label":134,"url":135},"Sponsor site offers general information about rare inherited retinal degenerative diseases studied by the Foundation.","https:\u002F\u002Fwww.fightingblindness.org",{"nct_id":4,"conditions":137,"biomarkers":155},[138,21,139,22,140,141,142,27,143,144,145,146,147,34,148,36,37,149,150,151,39,152,41,42,153,154,45,46],"Abetalipoproteinemia","Achromatopsia 3","Best vitelliform macular dystrophy","Charcot-Marie-Tooth Disease","Choroidal dystrophy","Cone dystrophy","Cone-Rod Dystrophies","Congenital stationary night blindness","Fundus albipunctatus","Goldmann-Favre syndrome","Inherited Retinal Degenerative Disease","Macular Degeneration, Juvenile","Neuronal Ceroid Lipofuscinosis Type 3","Refsum Disease","Retinitis punctata albescens","Rod dystrophy","Sorsby Fundus Dystrophy",[],{"nct_id":4,"found":90,"summary":157,"prompt_version":165},{"design":158,"status":159,"heading":6,"summary":160,"follow_up":87,"word_count":161,"commitments":162,"compensation":163,"drugs_mentioned":164},"This is an observational study, meaning researchers will collect information about your condition without giving you any specific treatments. It aims to enroll 20,000 participants.","completed","This registry, called My Retina Tracker®, is for people with inherited retinal degenerative diseases (eye conditions passed down through families that affect the retina, the light-sensitive tissue at the back of the eye). It's sponsored by the Foundation Fighting Blindness. You can join if you have been diagnosed with an inherited retinal degenerative disease. The goal is to collect information from many participants over a long period (up to 20 years) to better understand these rare conditions and identify different types of diagnoses. This study is ongoing and aims to enroll 20,000 people.",93,"You will create an online profile to share your perspective on your eye disease, family history, genetic test results, and general health. You can also ask your doctor to add clinical measurements to your profile.","Not stated in the trial record.",[],"v2"]