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Purpose

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

Condition

Eligibility

Eligible Ages
Over 3 Years
Eligible Sex
All
Accepts Healthy Volunteers
No

Inclusion Criteria

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

Exclusion Criteria

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)

Study Design

Phase
Study Type
Observational
Observational Model
Cohort
Time Perspective
Prospective

Arm Groups

ArmDescriptionAssigned Intervention
Participants With Inherited Retinal Diseases (IRDs) Adult and pediatric (greater than or equal to [>=] 3 years) participants with a documented genetic diagnosis of X-linked retinitis pigmentosa (XLRP) or Achromatopsia (ACHM) and any signs or symptoms of IRD or documented retinal changes detected by imaging or electrophysiology.
  • Other: Standard of Care
    Participants will not receive any intervention in this study. Participants will receive standard of care therapy.

Recruiting Locations

University of Alabama Birmingham
Birmingham, Alabama 35294

University of Arkansas for Medical Sciences
Little Rock, Arkansas 72205

University of Southern California
Los Angeles, California 90033

UCSF
San Francisco, California 94143

Bascom Palmer Eye Institute
Miami, Florida 33136

Emory University
Atlanta, Georgia 30322

University of Iowa
Iowa City, Iowa 52242

Ochsner Medical Center
New Orleans, Louisiana 70121

John Hopkins Hospital
Baltimore, Maryland 212051832

Univ of Michigan Medical Center
Ann Arbor, Michigan 48105

University Of Minnesota Medical Center
Minneapolis, Minnesota 55455

University of Rochester Medical Center
Rochester, New York 14642

Cleveland Clinic
Cleveland, Ohio 44195

Oregon Health And Science University
Portland, Oregon 97239

UPMC
Pittsburgh, Pennsylvania 15213

Retina Consultants of Texas
Bellaire, Texas 77401

University of Texas Houston
Houston, Texas 77204

More Details

NCT ID
NCT05957276
Status
Recruiting
Sponsor
Janssen Research & Development, LLC

Study Contact

Study Contact
844-434-4210
Participate-In-This-Study1@its.jnj.com

Notice

Study information shown on this site is derived from ClinicalTrials.gov (a public registry operated by the National Institutes of Health). The listing of studies provided is not certain to be all studies for which you might be eligible. Furthermore, study eligibility requirements can be difficult to understand and may change over time, so it is wise to speak with your medical care provider and individual research study teams when making decisions related to participation.