[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100484566":3},{"organization":4,"armGroups":7,"interventions":10,"overallOfficials":21,"centralContacts":26,"locations":32,"responsibleParty":589,"collaborators":591,"id":594,"slug":595,"hasResults":596,"nctId":597,"briefTitle":598,"officialTitle":598,"acronym":599,"eligibilityCriteria":600,"healthyVolunteers":596,"sex":601,"minAge":602,"maxAge":10,"enrollmentInfo":603,"targetDuration":10,"studyType":606,"phases":10,"briefSummary":607,"conditions":608,"keywords":611,"overallStatus":35,"whyStopped":10,"lastUpdateSubmitDate":612,"lastUpdatePostDateStruct":613,"startDateStruct":616,"completionDateStruct":618,"leadSponsor":620,"locationsCount":621},{"fullName":5,"class":6},"Jaeb Center for Health Research","OTHER",[8,12,15,18],{"label":9,"type":10,"description":11,"interventionNames":10},"Younger Age Cohort",null,"Participants ages ≥ 4 years and \\\u003C 8 years old will be designated as the Younger Age Cohort.\n\n* Participants in this cohort will not be assigned a Vision Cohort.\n* Registry\u002FScreening Visit and Natural History Study Visits will have an abbreviated testing schedule, detailed in the Schedule of Study Visits and Procedures table.",{"label":13,"type":10,"description":14,"interventionNames":10},"Vision Cohort 1","Participants who are aged ≥ 8 years old will be designated into a Vision Cohort based on data in the better eye, at the Registry\u002FScreening Visit. Criteria that must be met in the better eye\\* at the Registry\u002FScreening Visit: visual acuity ETDRS letter score of 54 or more (approximate Snellen equivalent 20\u002F80 or better) and visual field\\*\\* diameter 10 degrees or more in every meridian of the central field",{"label":16,"type":10,"description":17,"interventionNames":10},"Vision Cohort 2","Participants who are aged ≥ 8 years old will be designated into a Vision Cohort based on data in the better eye, at the Registry\u002FScreening Visit. Criteria that must be met in the better eye\\* at the Registry\u002FScreening Visit: visual acuity ETDRS letter score of 19-53 (approximate Snellen equivalent 20\u002F100 to 20\u002F400) or visual acuity ETDRS letter score of 54 or more (approximate Snellen equivalent 20\u002F80 or better) and visual field\\*\\* diameter less than 10 degrees in any meridian of the central field",{"label":19,"type":10,"description":20,"interventionNames":10},"Vision Cohort 3","Participants who are aged ≥ 8 years old will be designated into a Vision Cohort based on data in the better eye, at the Registry\u002FScreening Visit. Criteria that must be met in the better eye\\* at the Registry\u002FScreening Visit: visual acuity ETDRS letter score of 18 or less (approximate Snellen equivalent 20\u002F500 or worse)",[22],{"name":23,"affiliation":24,"role":25},"José-Alain Sahel, MD","Director, UPMC Eye Center University of Pittsburgh School of Medicine","STUDY_CHAIR",[27],{"name":28,"role":29,"phone":30,"phoneExt":10,"email":31},"Coordinating Center","CONTACT","813-975-8690","ffb@jaeb.org",[33,52,68,82,96,112,127,145,160,175,190,205,220,235,249,266,280,295,310,324,340,353,370,385,401,419,431,447,463,479,495,513,529,543,559,573],{"facility":34,"status":35,"city":36,"state":37,"zip":38,"country":39,"countryCode":40,"cosmosGeoPoint":41,"geoPoint":46,"contacts":47},"University of Arkansas, Jones Eye Institute","RECRUITING","Little Rock","Arkansas","72205","United States","US",{"type":42,"coordinates":43},"Point",[44,45],-92.28959,34.74648,{"lat":45,"lon":44},[48],{"name":49,"role":29,"phone":50,"phoneExt":10,"email":51},"Sami Uwaydat, MD","501-296-1156","schauhan@uams.edu",{"facility":53,"status":54,"city":55,"state":56,"zip":57,"country":39,"countryCode":40,"cosmosGeoPoint":58,"geoPoint":62,"contacts":63},"USC Roski Eye Institute","NOT_YET_RECRUITING","Los Angeles","California","90033",{"type":42,"coordinates":59},[60,61],-118.24368,34.05223,{"lat":61,"lon":60},[64],{"name":65,"role":29,"phone":66,"phoneExt":10,"email":67},"Hossein Ameri, MD, PhD","323-442-6490","mariana.edwards@med.usc.edu",{"facility":69,"status":35,"city":70,"state":56,"zip":71,"country":39,"countryCode":40,"cosmosGeoPoint":72,"geoPoint":76,"contacts":77},"University of California San Francisco","San Francisco","94158",{"type":42,"coordinates":73},[74,75],-122.41942,37.77493,{"lat":75,"lon":74},[78],{"name":79,"role":29,"phone":80,"phoneExt":10,"email":81},"Jacque Duncan, MD","(415)502-5161","ErikaMae.Reyes@ucsf.edu",{"facility":83,"status":35,"city":84,"state":85,"zip":86,"country":39,"countryCode":40,"cosmosGeoPoint":87,"geoPoint":91,"contacts":92},"University of Florida Health Jacksonville","Jacksonville","Florida","32209",{"type":42,"coordinates":88},[89,90],-81.65565,30.33218,{"lat":90,"lon":89},[93],{"name":94,"role":29,"phone":10,"phoneExt":10,"email":95},"Sandeep Grover, MD","Ghulam.hamdani@jax.ufl.edu",{"facility":97,"status":35,"city":98,"state":85,"zip":99,"country":39,"countryCode":40,"cosmosGeoPoint":100,"geoPoint":104,"contacts":105},"University of Miami, Bascom Palmer Eye Institute","Miami","33136",{"type":42,"coordinates":101},[102,103],-80.19366,25.77427,{"lat":103,"lon":102},[106,110],{"name":107,"role":29,"phone":108,"phoneExt":10,"email":109},"Byron Lam, MD","(305) 243-0314","srt150@med.miami.edu",{"name":10,"role":29,"phone":111,"phoneExt":10,"email":10},"(786) 218-8363",{"facility":113,"status":35,"city":114,"state":115,"zip":116,"country":39,"countryCode":40,"cosmosGeoPoint":117,"geoPoint":121,"contacts":122},"Emory University, Emory Eye Center","Atlanta","Georgia","30322",{"type":42,"coordinates":118},[119,120],-84.38798,33.749,{"lat":120,"lon":119},[123],{"name":124,"role":29,"phone":125,"phoneExt":10,"email":126},"Nieraj Jain, MD","404-778-4725","olga.ostretsova@emory.edu",{"facility":128,"status":35,"city":129,"state":130,"zip":131,"country":39,"countryCode":40,"cosmosGeoPoint":132,"geoPoint":136,"contacts":137},"Johns Hopkins University, Wilmer Eye Institute","Baltimore","Maryland","21236",{"type":42,"coordinates":133},[134,135],-76.61219,39.29038,{"lat":135,"lon":134},[138,142],{"name":139,"role":29,"phone":140,"phoneExt":10,"email":141},"Mandeep S. Singh, MD, PhD","443-287-7912","Mfrey3@jhmi.edu",{"name":10,"role":29,"phone":143,"phoneExt":10,"email":144},"410-502-1231","sthom142@jhmi.edu",{"facility":146,"status":35,"city":147,"state":148,"zip":149,"country":39,"countryCode":40,"cosmosGeoPoint":150,"geoPoint":154,"contacts":155},"Harvard Univ., Massachusetts Eye and Ear Infirmary","Boston","Massachusetts","02114",{"type":42,"coordinates":151},[152,153],-71.05977,42.35843,{"lat":153,"lon":152},[156],{"name":157,"role":29,"phone":158,"phoneExt":10,"email":159},"Rachel Huckfeldt, MD, PhD","617-573-4401","fperez7@meei.harvard.edu",{"facility":161,"status":35,"city":162,"state":163,"zip":164,"country":39,"countryCode":40,"cosmosGeoPoint":165,"geoPoint":169,"contacts":170},"University of Michigan, Kellogg Eye Center","Ann Arbor","Michigan","48105",{"type":42,"coordinates":166},[167,168],-83.74088,42.27756,{"lat":168,"lon":167},[171],{"name":172,"role":29,"phone":173,"phoneExt":10,"email":174},"Abigail Fahim, MD, PhD","734-615-8560","callieg@med.umich.edu",{"facility":176,"status":35,"city":177,"state":178,"zip":179,"country":39,"countryCode":40,"cosmosGeoPoint":180,"geoPoint":184,"contacts":185},"Mayo Clinic","Rochester","Minnesota","55905",{"type":42,"coordinates":181},[182,183],-92.4699,44.02163,{"lat":183,"lon":182},[186],{"name":187,"role":29,"phone":188,"phoneExt":10,"email":189},"Brittni Scruggs, MD, PhD","507-538-8119","Wernimont.Suzanne@mayo.edu",{"facility":191,"status":35,"city":192,"state":193,"zip":194,"country":39,"countryCode":40,"cosmosGeoPoint":195,"geoPoint":199,"contacts":200},"Duke University, Duke Eye Center","Durham","North Carolina","27705",{"type":42,"coordinates":196},[197,198],-78.89862,35.99403,{"lat":198,"lon":197},[201],{"name":202,"role":29,"phone":203,"phoneExt":10,"email":204},"Ramiro Maldonado, MD","1-919-668-8333","natalia.cook@duke.edu",{"facility":206,"status":35,"city":207,"state":208,"zip":209,"country":39,"countryCode":40,"cosmosGeoPoint":210,"geoPoint":214,"contacts":215},"Oregon Health & Science Univ., Casey Eye Institute","Portland","Oregon","97239",{"type":42,"coordinates":211},[212,213],-122.67621,45.52345,{"lat":213,"lon":212},[216],{"name":217,"role":29,"phone":218,"phoneExt":10,"email":219},"Lesley Everett, MD, PhD","(503) 494-3370","faleolse@ohsu.edu",{"facility":221,"status":35,"city":222,"state":223,"zip":224,"country":39,"countryCode":40,"cosmosGeoPoint":225,"geoPoint":229,"contacts":230},"University of Pennsylvania, Scheie Eye Institute","Philadelphia","Pennsylvania","19104",{"type":42,"coordinates":226},[227,228],-75.16362,39.95238,{"lat":228,"lon":227},[231],{"name":232,"role":29,"phone":233,"phoneExt":10,"email":234},"Tomas Aleman, MD","215-662-6396","Mariejel.weber@pennmedicine.upenn.edu",{"facility":236,"status":35,"city":237,"state":223,"zip":238,"country":39,"countryCode":40,"cosmosGeoPoint":239,"geoPoint":243,"contacts":244},"UPMC Eye Center","Pittsburgh","15213",{"type":42,"coordinates":240},[241,242],-79.99589,40.44062,{"lat":242,"lon":241},[245],{"name":246,"role":29,"phone":247,"phoneExt":10,"email":248},"Boris Rosin, MD, PhD","412-642-1940","alabekm@upmc.edu",{"facility":250,"status":35,"city":251,"state":252,"zip":253,"country":39,"countryCode":40,"cosmosGeoPoint":254,"geoPoint":258,"contacts":259},"Retina Foundation of the Southwest","Dallas","Texas","75231",{"type":42,"coordinates":255},[256,257],-96.80667,32.78306,{"lat":257,"lon":256},[260,264],{"name":261,"role":29,"phone":262,"phoneExt":10,"email":263},"Mark Pennesi, PhD","214-363-3911","kwebb@retinafoundation.org",{"name":265,"role":29,"phone":10,"phoneExt":10,"email":10},"Kaylie Jones",{"facility":267,"status":35,"city":268,"state":252,"zip":269,"country":39,"countryCode":40,"cosmosGeoPoint":270,"geoPoint":274,"contacts":275},"Baylor College of Medicine, Alkek Eye Center","Houston","77030",{"type":42,"coordinates":271},[272,273],-95.36327,29.76328,{"lat":273,"lon":272},[276],{"name":277,"role":29,"phone":278,"phoneExt":10,"email":279},"John T. Stout, MD, PhD","713-798-2759","Isabella.Valli@bcm.edu",{"facility":281,"status":35,"city":282,"state":283,"zip":284,"country":39,"countryCode":40,"cosmosGeoPoint":285,"geoPoint":289,"contacts":290},"University of Utah, John Moran Eye Center","Salt Lake City","Utah","84132",{"type":42,"coordinates":286},[287,288],-111.89105,40.76078,{"lat":288,"lon":287},[291],{"name":292,"role":29,"phone":293,"phoneExt":10,"email":294},"Paul Bernstein, MD, PhD","801-213-2034","u0740625@utah.edu",{"facility":296,"status":35,"city":297,"state":298,"zip":299,"country":39,"countryCode":40,"cosmosGeoPoint":300,"geoPoint":304,"contacts":305},"University of Wisconsin Madison","Madison","Wisconsin","53711",{"type":42,"coordinates":301},[302,303],-89.40123,43.07305,{"lat":303,"lon":302},[306],{"name":307,"role":29,"phone":308,"phoneExt":10,"email":309},"Kimberly Stepien, MD","608-263-8783","nstangel@wisc.edu",{"facility":311,"status":35,"city":312,"state":298,"zip":313,"country":39,"countryCode":40,"cosmosGeoPoint":314,"geoPoint":318,"contacts":319},"Medical College of Wisconsin Eye Institute","Milwaukee","53226",{"type":42,"coordinates":315},[316,317],-87.90647,43.0389,{"lat":317,"lon":316},[320],{"name":321,"role":29,"phone":322,"phoneExt":10,"email":323},"Thomas Connor, MD","414-955-2001","psummer@mcw.edu",{"facility":325,"status":35,"city":326,"state":327,"zip":10,"country":328,"countryCode":329,"cosmosGeoPoint":330,"geoPoint":334,"contacts":335},"Centre for Eye Research Australia","East Melbourne","Victoria","Australia","AU",{"type":42,"coordinates":331},[332,333],144.9879,-37.81667,{"lat":333,"lon":332},[336],{"name":337,"role":29,"phone":338,"phoneExt":10,"email":339},"Lauren Ayton, MD, PhD","61 3 8344 3441","IRD@groups.unimelb.edu.au",{"facility":341,"status":54,"city":342,"state":10,"zip":10,"country":343,"countryCode":344,"cosmosGeoPoint":345,"geoPoint":349,"contacts":350},"Ghent University","Ghent","Belgium","BE",{"type":42,"coordinates":346},[347,348],3.71667,51.05,{"lat":348,"lon":347},[351],{"name":352,"role":29,"phone":10,"phoneExt":10,"email":10},"Bart Leroy, MD, PhD",{"facility":354,"status":35,"city":355,"state":356,"zip":357,"country":358,"countryCode":359,"cosmosGeoPoint":360,"geoPoint":364,"contacts":365},"INRET Clínica e Centro de Pesquisa","Belo Horizonte","Minas Gerais","30150-270","Brazil","BR",{"type":42,"coordinates":361},[362,363],-43.93778,-19.92083,{"lat":363,"lon":362},[366],{"name":367,"role":29,"phone":368,"phoneExt":10,"email":369},"Fernanda Belga Ottoni Porto, MD, PhD","55 31 32264882","fernandabop@gmail.com",{"facility":371,"status":35,"city":372,"state":373,"zip":10,"country":358,"countryCode":359,"cosmosGeoPoint":374,"geoPoint":378,"contacts":379},"Instituto de Genética Ocular","São Paulo","São Paulo Province",{"type":42,"coordinates":375},[376,377],-46.63611,-23.5475,{"lat":377,"lon":376},[380],{"name":381,"role":29,"phone":382,"phoneExt":383,"email":384},"Juliana Sallum, MD, PhD","55 11 98346","3053","pesquisa@institutodegeneticaocular.com.br",{"facility":386,"status":35,"city":387,"state":388,"zip":10,"country":389,"countryCode":390,"cosmosGeoPoint":391,"geoPoint":395,"contacts":396},"University of Alberta and Alberta Health Services","Edmonton","Alberta","Canada","CA",{"type":42,"coordinates":392},[393,394],-113.46871,53.55014,{"lat":394,"lon":393},[397],{"name":398,"role":29,"phone":399,"phoneExt":10,"email":400},"Ian MacDonald, MSc, MD CM","780 492 8869","ovstrial@ualberta.ca",{"facility":402,"status":35,"city":403,"state":404,"zip":405,"country":389,"countryCode":390,"cosmosGeoPoint":406,"geoPoint":410,"contacts":411},"University of Toronto, Hospital for Sick Children","Toronto","Ontario","M5G 2L3",{"type":42,"coordinates":407},[408,409],-79.39864,43.70643,{"lat":409,"lon":408},[412,417],{"name":413,"role":29,"phone":414,"phoneExt":415,"email":416},"Elise Heon, MD","416.813.7654","301511","sabahat.javaid@sickkids.ca",{"name":418,"role":29,"phone":10,"phoneExt":10,"email":10},"Sabahat Javaid",{"facility":420,"status":35,"city":403,"state":10,"zip":421,"country":389,"countryCode":390,"cosmosGeoPoint":422,"geoPoint":424,"contacts":425},"University Health Network","M5T 2S8",{"type":42,"coordinates":423},[408,409],{"lat":409,"lon":408},[426],{"name":427,"role":29,"phone":428,"phoneExt":429,"email":430},"Brian Ballios, MD, PhD","416-603-5800","3106","Zahra.Baghestani@uhn.ca",{"facility":432,"status":35,"city":433,"state":10,"zip":434,"country":435,"countryCode":436,"cosmosGeoPoint":437,"geoPoint":441,"contacts":442},"Helsinki University Hospital","Helsinki","00100","Finland","FI",{"type":42,"coordinates":438},[439,440],24.93545,60.16952,{"lat":440,"lon":439},[443],{"name":444,"role":29,"phone":445,"phoneExt":10,"email":446},"Eeva-Marja Sankila, MD","+358 9 4711","eeva-marja.sankila@hus.fi",{"facility":448,"status":35,"city":449,"state":10,"zip":450,"country":451,"countryCode":452,"cosmosGeoPoint":453,"geoPoint":457,"contacts":458},"CHNO des Quinze-Vingts","Paris","75012","France","FR",{"type":42,"coordinates":454},[455,456],2.3488,48.85341,{"lat":456,"lon":455},[459],{"name":460,"role":29,"phone":461,"phoneExt":10,"email":462},"Isabelle Audo, MD","+33(0) 1 40 02 14 55","tdib@15-20.fr",{"facility":464,"status":35,"city":465,"state":10,"zip":466,"country":467,"countryCode":468,"cosmosGeoPoint":469,"geoPoint":473,"contacts":474},"Hadassah-Hebrew University Medical Center","Jerusalem","9112001","Israel","IL",{"type":42,"coordinates":470},[471,472],35.21633,31.76904,{"lat":472,"lon":471},[475],{"name":476,"role":29,"phone":477,"phoneExt":10,"email":478},"Eyal Banin, MD","972-54-4969153","devoramarks@gmail.com",{"facility":480,"status":35,"city":481,"state":10,"zip":482,"country":483,"countryCode":484,"cosmosGeoPoint":485,"geoPoint":489,"contacts":490},"Vista Vision Eye Clinic","Brescia","25123","Italy","IT",{"type":42,"coordinates":486},[487,488],10.21472,45.53558,{"lat":488,"lon":487},[491],{"name":492,"role":29,"phone":493,"phoneExt":10,"email":494},"Giacomo Calzetti, MD","39 333 932 9837","giacomocalzetti@gmail.com",{"facility":496,"status":35,"city":497,"state":498,"zip":10,"country":499,"countryCode":500,"cosmosGeoPoint":501,"geoPoint":505,"contacts":506},"Retina and Genomics Institute","Yucatán","Merida","Mexico","MX",{"type":42,"coordinates":502},[503,504],-96.36167,19.34472,{"lat":504,"lon":503},[507,511],{"name":508,"role":29,"phone":509,"phoneExt":10,"email":510},"Adda Villanueva, MD","52 999 22 33 623","info@mejoravisionmd.com",{"name":10,"role":29,"phone":512,"phoneExt":10,"email":10},"52 999 406 0586",{"facility":514,"status":35,"city":515,"state":10,"zip":516,"country":517,"countryCode":518,"cosmosGeoPoint":519,"geoPoint":523,"contacts":524},"Radboud University Medical Center","Nijmegen","6525 GA","Netherlands","NL",{"type":42,"coordinates":520},[521,522],5.85278,51.8425,{"lat":522,"lon":521},[525],{"name":526,"role":29,"phone":527,"phoneExt":10,"email":528},"Suzanna Yzer, MD","+31 24 3613212","jack.weeda@radboudumc.nl",{"facility":530,"status":54,"city":531,"state":10,"zip":10,"country":532,"countryCode":533,"cosmosGeoPoint":534,"geoPoint":538,"contacts":539},"Oslo University Hospital","Oslo","Norway","NO",{"type":42,"coordinates":535},[536,537],10.74609,59.91273,{"lat":537,"lon":536},[540],{"name":541,"role":29,"phone":10,"phoneExt":10,"email":542},"Josephine P Holtan, MD, PhD","thatre@ous-hf.no",{"facility":544,"status":35,"city":545,"state":546,"zip":10,"country":547,"countryCode":548,"cosmosGeoPoint":549,"geoPoint":553,"contacts":554},"University Hospital Basel","Basel","Canton of Basel-City","Switzerland","CH",{"type":42,"coordinates":550},[551,552],7.57327,47.55839,{"lat":552,"lon":551},[555],{"name":556,"role":29,"phone":557,"phoneExt":10,"email":558},"Nicolas Feltgen, MD","41 79 172 92 48","ursula.hall@usb.ch",{"facility":560,"status":35,"city":561,"state":10,"zip":562,"country":547,"countryCode":548,"cosmosGeoPoint":563,"geoPoint":567,"contacts":568},"University Hospital Jules-Gonin","Lausanne","1004",{"type":42,"coordinates":564},[565,566],6.63282,46.516,{"lat":566,"lon":565},[569],{"name":570,"role":29,"phone":571,"phoneExt":10,"email":572},"Hoai V. Tran, MD","+41 (0)21 626 8154","flavie.torrecillos@fa2.ch",{"facility":574,"status":35,"city":575,"state":10,"zip":576,"country":577,"countryCode":578,"cosmosGeoPoint":579,"geoPoint":583,"contacts":584},"Moorfields Eye Hospital","London","EC1V 2PD","United Kingdom","UK",{"type":42,"coordinates":580},[581,582],-0.12574,51.50853,{"lat":582,"lon":581},[585],{"name":586,"role":29,"phone":587,"phoneExt":10,"email":588},"Michel Michaelides, MD","02075662108","nusrat.haque3@nhs.net",{"type":590,"investigatorFullName":10,"investigatorTitle":10,"investigatorAffiliation":10,"oldNameTitle":10,"oldOrganization":10},"SPONSOR",[592],{"name":593,"class":6},"Foundation Fighting Blindness","100484566","universal-rare-gene-study-a-registry-and-natural-history-study-of-retinal-dystrophies-associated-with-rare-disease-causing-genetic-variants-100484566",false,"NCT05589714","Universal Rare Gene Study: A Registry and Natural History Study of Retinal Dystrophies Associated With Rare Disease-Causing Genetic Variants","Uni-Rare","Inclusion Criteria: Participants must meet all the following inclusion criteria at the Registry\u002FScreening Visit to be eligible to enroll into the genetic screening phase:\n\n1. Willing to participate in the study and able to communicate consent during the consent process\n2. Willing and able to complete all applicable Registry\u002FScreening Visit assessments\n3. Age ≥ 4 years\n4. Must have a single gene on the RD Rare Gene List which meets one of the Genetic Screening Criteria below based on a genetic report\\* from a clinically certified lab (or from a research lab which has been approved by the study Genetics Committee):\n\nInheritance Pattern is Recessive and has at least 2 disease-causing variants which are homozygous or heterozygous in trans\n\nOR\n\nInheritance Pattern is Recessive and has 2 disease-causing variants with unknown phase and meets all the following additional informatic criteria that is consistent with likely segregation in trans:\n\n1. Investigator confirms genotype and phenotype are consistent with autosomal recessive inheritance\n2. The 2 disease-causing variants have not been reported in cis in variant databases\n3. No additional potentially pathogenic variants were found on the gene (and the sequencing data for the gene were sufficiently robust to detect any additional potentially pathogenic variants)\n4. No potentially pathogenic variants were found in other common, likely candidate genes for the proposed condition\n\nOR\n\nInheritance Pattern is Dominant, X-linked, or Mitochondrial and has at least 1 disease-causing variant\n\nBoth eyes must meet the following criteria at the Registry\u002FScreening Visit to enroll into the genetic screening phase:\n\n1. Both eyes must have a clinical diagnosis of retinal dystrophy\n2. Both eyes must permit good quality photographic imaging (e.g., but not limited to, clear ocular media, adequate pupil dilation, stable fixation)\n\nExclusion Criteria:\n\nParticipants must not meet any of the following exclusion criteria at the Registry\u002FScreening Visit to be eligible to enroll into the genetic screening phase:\n\n1\\. History of more than 1 year of cumulative treatment, at any time, with an agent associated with pigmentary retinopathy including amiodarone, chloroquine, deferoxamine, hydroxychloroquine, pentosan polysulfate, tamoxifen, and deferoxamine Note: Since this is an observational study, pregnant women will not be specifically excluded from participation. However, minors that are pregnant shall be precluded from participation until they become the age of majority.\n\nOcular Exclusion Criteria:\n\nIf either eye has any of the following ocular exclusion criteria at the Registry\u002FScreening Visit, then the participant is not eligible to enroll into the genetic screening phase:\n\n1. Current vitreous hemorrhage\n2. Current complications of pathological myopia (for example, but not limited to, myopic maculopathy including atrophy, scar, choroidal neovascularization, schisis) that could inhibit ability to obtain good quality photographic imaging\n3. History of intraocular surgery (for example, but not limited to, cataract surgery, vitrectomy, penetrating keratoplasty, or LASIK) within 3 months of Registry\u002FScreening Visit\n4. Current or any history of confirmed diagnosis of glaucoma (for example, but not limited to, glaucomatous VF changes or nerve changes, or history of glaucoma filtering surgery)\n5. Current or any history of retinal vascular occlusion or proliferative diabetic retinopathy\n6. History or current evidence of ocular disease that, in the opinion of the Investigator, may confound assessment of visual function (for example, but not limited to, tractional or rhegmatogenous retinal detachment, any vitreoretinal surgery, retinal vascular occlusion, proliferative diabetic retinopathy)\n7. The following medications and treatments are prohibited as they can affect progression of retinitis pigmentosa (RP). The participant must not have received the following treatments:\n\n   Any use of ocular stem cell or gene therapy Any treatment with ocriplasmin Treatment with Ozurdex (dexamethasone), Iluvien, or Yutiq (fluocinolone acetonide) intravitreal implant\n8. The following medications and treatments are excluded within the specified timeframe:\n\nTreatment with an ophthalmic oligonucleotide within the last 9 months (last treatment date is less than 9 months prior to Registry\u002FScreening Visit date)\n\nTreatment with any other product within five times the expected half-life of the product (time from last treatment date to Registry\u002FScreening Visit date is at least 5 times the half-life of the given product)","ALL","4 Years",{"count":604,"type":605},1500,"ESTIMATED","OBSERVATIONAL","This is an international, multicenter study with two components:\n\nRegistry\n\n* A standardized genetic screening and a prospective, standardized, cross-sectional clinical data collection\n* Enrollment is open to all genes on the RD Rare Gene List\n\nNatural History Study\n\n* A prospective, standardized, longitudinal Natural History Study\n* Enrollment opens gene-by-gene, based on funding and within-gene Registry enrollment The study objectives are as follows.\n\nRegistry Objectives\n\n1. Genotype Characterization\n2. Cross-Sectional Phenotype Characterization (within gene)\n3. Establish a Link to My Retina Tracker Registry (MRTR)\n4. Ancillary Exploratory Studies - Pooling of Genes\n\nNatural History Study Objectives\n\n1. Natural History (within gene)\n2. Structure-Function Relationship (within gene)\n3. Risk Factors for Progression (within gene)\n4. Ancillary Exploratory Studies - Pooling of Genes",[609,610],"Inherited Retinal Degeneration","Retinitis Pigmentosa",[609],"2026-06-24",{"date":614,"type":615},"2026-06-26","ACTUAL",{"date":617,"type":615},"2023-05-11",{"date":619,"type":605},"2030-12-15",{"name":5,"class":6},36]