Massive study tracks rare eye diseases to pave way for future treatments

NCT ID NCT05589714

Recruiting now Knowledge-focused Sponsor: Jaeb Center for Health Research Source: ClinicalTrials.gov ↗

First seen Jun 27, 2026 · Last updated Aug 13, 2026 · Updated 2 times

Summary

This international study aims to collect genetic and health information from 1,500 people with rare inherited retinal diseases like retinitis pigmentosa. It has two parts: a registry to gather genetic and vision data, and a natural history study that follows participants over time to see how their vision changes. The goal is to better understand these rare conditions, which could help researchers develop and test new treatments in the future.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

What this could lead to: If successful, this study could provide crucial data to help design future treatments for rare retinal diseases.
What could go wrong: This is an observational study, not testing a treatment. It may not directly benefit participants and results depend on long-term follow-up.

This is an AI summary of the original study and may miss details. Read our disclaimer.

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Conditions

The condition(s) this trial relates to.

inherited retinal dystrophy retinitis pigmentosa

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

INHERITED RETINAL DEGENERATION RETINITIS PIGMENTOSA

Contacts and locations

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Locations

Baylor College of Medicine, Alkek Eye Center
RECRUITING

Houston, Texas, 77030, United States
CHNO des Quinze-Vingts
RECRUITING

Paris, 75012, France
Centre for Eye Research Australia
RECRUITING

East Melbourne, Victoria, Australia
Duke University, Duke Eye Center
RECRUITING

Durham, North Carolina, 27705, United States
Emory University, Emory Eye Center
RECRUITING

Atlanta, Georgia, 30322, United States
Ghent University
NOT_YET_RECRUITING

Ghent, Belgium
Hadassah-Hebrew University Medical Center
RECRUITING

Jerusalem, 9112001, Israel
Harvard Univ., Massachusetts Eye and Ear Infirmary
RECRUITING

Boston, Massachusetts, 02114, United States
Helsinki University Hospital
RECRUITING

Helsinki, 00100, Finland
INRET Clínica e Centro de Pesquisa
RECRUITING

Belo Horizonte, Minas Gerais, 30150-270, Brazil
Instituto de Genética Ocular
RECRUITING

São Paulo, São Paulo Province, Brazil
Johns Hopkins University, Wilmer Eye Institute
RECRUITING

Baltimore, Maryland, 21236, United States
Mayo Clinic
RECRUITING

Rochester, Minnesota, 55905, United States
Medical College of Wisconsin Eye Institute
RECRUITING

Milwaukee, Wisconsin, 53226, United States
Moorfields Eye Hospital
RECRUITING

London, EC1V 2PD, United Kingdom
Oregon Health & Science Univ., Casey Eye Institute
RECRUITING

Portland, Oregon, 97239, United States
Oslo University Hospital
NOT_YET_RECRUITING

Oslo, Norway
Radboud University Medical Center
RECRUITING

Nijmegen, 6525 GA, Netherlands
Retina Foundation of the Southwest
RECRUITING

Dallas, Texas, 75231, United States
Retina and Genomics Institute
RECRUITING

Yucatán, Merida, Mexico

Contact Email: •••••@•••••
UPMC Eye Center
RECRUITING

Pittsburgh, Pennsylvania, 15213, United States
USC Roski Eye Institute
RECRUITING

Los Angeles, California, 90033, United States
University Health Network
RECRUITING

Toronto, M5T 2S8, Canada
University Hospital Basel
RECRUITING

Basel, Canton of Basel-City, Switzerland
University Hospital Jules-Gonin
RECRUITING

Lausanne, 1004, Switzerland
University of Alberta and Alberta Health Services
RECRUITING

Edmonton, Alberta, Canada

Contact Email: •••••@•••••
University of Arkansas, Jones Eye Institute
RECRUITING

Little Rock, Arkansas, 72205, United States
University of California San Francisco
RECRUITING

San Francisco, California, 94158, United States
University of Florida Health Jacksonville
RECRUITING

Jacksonville, Florida, 32209, United States
University of Miami, Bascom Palmer Eye Institute
RECRUITING

Miami, Florida, 33136, United States
University of Michigan, Kellogg Eye Center
RECRUITING

Ann Arbor, Michigan, 48105, United States
University of Pennsylvania, Scheie Eye Institute
RECRUITING

Philadelphia, Pennsylvania, 19104, United States
University of Toronto, Hospital for Sick Children
RECRUITING

Toronto, Ontario, M5G 2L3, Canada
University of Utah, John Moran Eye Center
RECRUITING

Salt Lake City, Utah, 84132, United States
University of Wisconsin Madison
RECRUITING

Madison, Wisconsin, 53711, United States
Vista Vision Eye Clinic
RECRUITING

Brescia, 25123, Italy

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