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Global Patient Registry of Inherited Retinal Diseases

Recruiting
3 years of age
Both
Phase N/A

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Overview

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

Eligibility

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 details

Inherited Retinal Diseases

NCT05957276

Janssen Research & Development, LLC

9 May 2025

Step 1 Get in touch with the nearest study center
What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
  • Sign up as volunteer  to help accelerate the development of new treatments and to get notified about similar trials.

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