Global Patient Registry of Inherited Retinal Diseases
Inherited Retinal DiseasesThe 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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Participation Requirements
-
Sex:
ALL -
Eligible Ages:
3 and up
Participation Criteria
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 Location
Sunnybrook Health Sciences Center
Sunnybrook Health Sciences CenterToronto, Ontario
Canada
Contact Study Team
- Study Sponsored By
- Janssen Research & Development, LLC
- Participants Required
- More Information
- Study ID:
NCT05957276