Informations générales (source: ClinicalTrials.gov)
Global Patient Registry of Inherited Retinal Disease
Observational
Janssen Research & Development, LLC (Voir sur ClinicalTrials)
août 2023
juillet 2026
02 décembre 2025
The purpose of this study is to better understand the natural history of Inherited
Retinal Disease (IRD) and help inform patient management.
Etablissements
| Les établissements sans correspondance certaine dans le répertoire FINESS dont les données sont issues de ClinicalTrials.gov Origine et niveau de fiabilité des données | |||||
|---|---|---|---|---|---|
| Hopitaux universitaires de Strasbourg - 67091 - Srasbourg - France | Contact (sur clinicalTrials) | ||||
Critères
Tous
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)