Global Patient Registry of Inherited Retinal Diseases (EYERD Registry)

Janssen (J&J Innovative Medicine)

Status: Enrolling

Conditions: Inherited Retinal Diseases

Treatments: Other: Standard of Care

Study type: Observational

Funder types: Industry

Identifiers

NCT05957276

CR109326

NOPRODRPG0002 (Other Identifier)

Details and patient eligibility

About

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

Enrollment: 7,000 estimated patients

Sex: All

Ages: 3+ years old

Volunteers: No Healthy Volunteers

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)

Trial design

7,000 participants in 1 patient group

Participants With Inherited Retinal Diseases (IRDs)

Description:

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.

Treatment:

Other: Standard of Care