Informations générales (source: ClinicalTrials.gov)
Global Patient Registry of Inherited Retinal Disease
Observational
Janssen Research & Development, LLC (Voir sur ClinicalTrials)
avril 1992
mai 2031
12 septembre 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 d'Île-de-France dont les données sont issues de ClinicalTrials.gov Origine et niveau de fiabilité des données | |||||
|---|---|---|---|---|---|
| AP-HP - Hôpital Necker-Enfants Malades | Contact (sur clinicalTrials) | ||||
| CHNO DES QUINZE-VINGTS PARIS | Contact (sur clinicalTrials) | ||||
| Les établissements sans correspondance certaine dans le répertoire FINESS dont les données sont issues de ClinicalTrials.gov Origine et niveau de fiabilité des données | |||||
| CHU Montpellier - 34295 - Montpellier - France | Contact (sur clinicalTrials) | ||||
| CHU Nantes - F44093 - Nantes - France | Contact (sur clinicalTrials) | ||||
| Hopitaux universitaires de Strasbourg - 67091 - Srasbourg - France | Contact (sur clinicalTrials) | ||||
Critères
Tous
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
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
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)