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

More Details

NCT ID
NCT05957276
Status
Active, not recruiting
Sponsor
Janssen Research & Development, LLC

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.