Global Patient Registry of Inherited Retinal Diseases (NCT05957276) | Clinical Trial Compass
Active — Not RecruitingNot Applicable
Global Patient Registry of Inherited Retinal Diseases
United States889 participantsStarted 2023-08-31
Plain-language summary
The purpose of this study is to better understand the natural history of Inherited Retinal Disease (IRD) and help inform patient management.
Who can participate
Age range3 Years
SexALL
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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)