Global Patient Registry of Inherited Retinal Diseases
Conditions:
Inherited Retinal Diseases
Sponsor: Janssen Research & Development, LLC
trial.available_in:
БГ
Overview
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
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)
Locations
16
Australia (1)
Centre for Eye Research Australia
East Melbourne
Belgium (1)
Ghent University Hospital
Ghent
Brazil (1)
INRET Clínica e Centro de Pesquisa
Belo Horizonte
Canada (1)
Sunnybrook Health Sciences Center
Toronto , Ontario
China (1)
Beijing Children's Hospital, Capital Medical University
Beijing
Denmark (1)
Rigshospitalet Glostrup
Glostrup Municipality
Finland (1)
Helsingin Yliopistollinen Keskussairaala
Helsinki
France (1)
CHU Montpellier
Montpellier
Israel (1)
The Chaim Sheba Medical Center
Ramat Gan
Italy (1)
Arcispedale S. Anna Ferrara
Ferrara
Japan (1)
Kyushu University Hospital
Fukuoka
South Korea (1)
Seoul National University Bundang Hospital
Gyeonggi-do
Spain (1)
Hosp. Univ. de Bellvitge
Barcelona
Switzerland (1)
University Hospital Basel, Eye Clinic/Institute of Molecular and Clinical