Universal Rare Gene Study: A Registry and Natural History Study of Retinal Dystrophies Associated With Rare Disease-Causing Genetic Variants

RecruitingOBSERVATIONAL
Enrollment

1,500

Participants

Timeline

Start Date

May 11, 2023

Primary Completion Date

December 15, 2029

Study Completion Date

December 15, 2030

Conditions
Inherited Retinal DegenerationRetinitis Pigmentosa
Trial Locations (36)

1004

NOT_YET_RECRUITING

University Hospital Jules-Gonin, Lausanne

15213

RECRUITING

UPMC Eye Center, Pittsburgh

19104

RECRUITING

University of Pennsylvania, Scheie Eye Institute, Philadelphia

21236

RECRUITING

Johns Hopkins University, Wilmer Eye Institute, Baltimore

25123

RECRUITING

Vista Vision Eye Clinic, Brescia

27705

RECRUITING

Duke University, Duke Eye Center, Durham

30322

RECRUITING

Emory University, Emory Eye Center, Atlanta

32209

RECRUITING

University of Florida Health Jacksonville, Jacksonville

33136

RECRUITING

University of Miami, Bascom Palmer Eye Institute, Miami

48105

RECRUITING

University of Michigan, Kellogg Eye Center, Ann Arbor

53226

RECRUITING

Medical College of Wisconsin Eye Institute, Milwaukee

53711

RECRUITING

University of Wisconsin Madison, Madison

55905

RECRUITING

Mayo Clinic, Rochester

72205

RECRUITING

University of Arkansas, Jones Eye Institute, Little Rock

75012

RECRUITING

CHNO des Quinze-Vingts, Paris

75231

RECRUITING

Retina Foundation of the Southwest, Dallas

77030

RECRUITING

Baylor College of Medicine, Alkek Eye Center, Houston

84132

RECRUITING

University of Utah, John Moran Eye Center, Salt Lake City

90033

NOT_YET_RECRUITING

USC Roski Eye Institute, Los Angeles

94158

RECRUITING

University of California San Francisco, San Francisco

97239

RECRUITING

Oregon Health & Science Univ., Casey Eye Institute, Portland

9112001

RECRUITING

Hadassah-Hebrew University Medical Center, Jerusalem

02114

RECRUITING

Harvard Univ., Massachusetts Eye and Ear Infirmary, Boston

Unknown

RECRUITING

Centre for Eye Research Australia, East Melbourne

NOT_YET_RECRUITING

Ghent University, Ghent

RECRUITING

Instituto de Genética Ocular, São Paulo

RECRUITING

University of Alberta and Alberta Health Services, Edmonton

RECRUITING

Retina and Genomics Institute, Yucatán

NOT_YET_RECRUITING

Oslo University Hospital, Oslo

RECRUITING

University Hospital Basel, Basel

30150-270

RECRUITING

INRET Clínica e Centro de Pesquisa, Belo Horizonte

M5G 2L3

RECRUITING

University of Toronto, Hospital for Sick Children, Toronto

M5T 2S8

RECRUITING

University Health Network, Toronto

00100

NOT_YET_RECRUITING

Helsinki University Hospital, Helsinki

6525 GA

RECRUITING

Radboud University Medical Center, Nijmegen

EC1V 2PD

RECRUITING

Moorfields Eye Hospital, London

All Listed Sponsors
collaborator

Foundation Fighting Blindness

OTHER

lead

Jaeb Center for Health Research

OTHER