Global Patient Registry of Inherited Retinal Diseases

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About the study

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

You may be eligible to participate in the study if you meet the following criteria:

INCLUSION CRITERIA

Inclusion Criteria:

For Participant Selection:

  1. * 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
  2. * 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)
  3. * Participant or legally acceptable representative has provided informed consent (and participant assent, when applicable) in accordance with local requirements
  4. * Participant is able to have relevant visual and/or retinal assessments performed

For Caregiver Selection:

  1. * Caregiver has consent from the associated participant to participate in the study, or participant assent and consent from their legally acceptable representative
  2. * Male or female aged greater than or equal to (\>=)18 years
  3. * Identified by an enrolled participant (or their legally acceptable representative\*) as a primary caregiver
  4. * Caregiver has provided informed consent in accordance with local requirements

EXCLUSION CRITERIA

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)

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Study Locations

Enter your ZIP code/Postal code/PIN code to locate study sites near you:

How to Apply


Contact the study center to learn if this study is a good match for you.
Phone iconCall 844-434-4210Email iconEmail Study Center

Study Details


Contition
Inherited Retinal Diseases
Age (in years)
3+
Participants Needed
7000
Est. Completion Date
May 19, 2031
Treatment Type
OBSERVATIONAL

Sponsor
Janssen Research & Development, LLC
ClinicalTrials.gov NCT Identifier
NCT05957276
Study Number
NOPRODRPG0002

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