Global Patient Registry of Inherited Retinal Diseases
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.
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:
- 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
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 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.
Study Details
Contition
Inherited Retinal Diseases
Age
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
Understanding Clinical Trials
Get answers to your questions about clinical trials.What is clinical research?What does taking part in clinical trials involve?What should I ask the trial doctor?