Global Patient Registry of Inherited Retinal Diseases

Running, not enrolling

Conditions studied: Inherited Retinal Diseases

In brief

The purpose of this study is to better understand the natural history of Inherited Retinal Disease (IRD) and help inform patient management.

Key facts

Study ID

NCT05957276

Run by

Janssen Research & Development, LLC

People needed

888

Starts

2023-08-31

Expected to finish

2026-07-03

Last updated by the study team

2026-07-06

Who can join

Age: 3 and older. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• For Participant Selection:
• Participant has any clinically documented sign(s) and/or symptom(s) consistent with an Inherited Retinal Disease (IRD), or asymptomatic with documented retinal changes detected by imaging or electrophysiology
• Participant has documented genetic variant(s) (known pathogenic, likely pathogenic, or variants of uncertain significance) in relevant genes for any of the following IRDs: X-Linked Retinitis Pigmentosa (XLRP) and/or Achromatopsia (ACHM)
• Participant or legally acceptable representative has provided informed consent (and participant assent, when applicable) in accordance with local requirements
• Participant is able to have relevant visual and/or retinal assessments performed
• For Caregiver Selection:
• Caregiver has consent from the associated participant to participate in the study, or participant assent and consent from their legally acceptable representative
• Male or female aged greater than or equal to (>=)18 years
• Identified by an enrolled participant (or their legally acceptable representative*) as a primary caregiver
• Caregiver has provided informed consent in accordance with local requirements

You may not qualify if…

• For Participant Selection:
• Participant has received a treatment in an IRD-related interventional trial, or is being screened for an IRD-related interventional trial
• For Caregiver Selection:
• Caregiver has an IRD diagnosis and presents with symptoms (visual impairment)

Where it is running

• Hosp. Univ. de Bellvitge — Barcelona, Spain
• Hosp. Sant Joan de Deu — Barcelona, Spain
• University of Alabama Birmingham — Birmingham, Alabama, United States
• University of Arkansas for Medical Sciences — Little Rock, Arkansas, United States
• Severance Hospital — Seoul, South Korea
• University of Southern California — Los Angeles, California, United States
• UCSF — San Francisco, California, United States
• Bascom Palmer Eye Institute — Miami, Florida, United States
• Emory University — Atlanta, Georgia, United States
• University of Iowa — Iowa City, Iowa, United States
• Ochsner Medical Center — New Orleans, Louisiana, United States
• John Hopkins Hospital — Baltimore, Maryland, United States
• Univ of Michigan Medical Center — Ann Arbor, Michigan, United States
• University Of Minnesota Medical Center — Minneapolis, Minnesota, United States
• University of Rochester Medical Center — Rochester, New York, United States
• Cleveland Clinic — Cleveland, Ohio, United States
• Oregon Health And Science University — Portland, Oregon, United States
• UPMC — Pittsburgh, Pennsylvania, United States
• Retina Consultants of Texas — Bellaire, Texas, United States
• Baylor College of Medicine — Houston, Texas, United States
• University of Texas Houston — Houston, Texas, United States
• Centre for Eye Research Australia — East Melbourne, Australia
• Lions Eye Institute — Nedlands, Australia
• Sydney Children's Hospital — Westmead, Australia
• Samsung Medical Center — Seoul, South Korea

Full record on ClinicalTrials.gov

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