Global Patient Registry of Inherited Retinal Diseases
Заболявания:
Inherited Retinal Diseases
Спонсор: Janssen Research & Development, LLC
Налично на:
БГ
Обобщение
The purpose of this study is to better understand the natural history of Inherited Retinal Disease (IRD) and help inform patient management.
Кой може да участва
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)
Места на провеждане
16
Австралия (1)
Centre for Eye Research Australia
East Melbourne
Белгия (1)
Ghent University Hospital
Ghent
Бразилия (1)
INRET Clínica e Centro de Pesquisa
Belo Horizonte
Канада (1)
Sunnybrook Health Sciences Center
Toronto , Ontario
Китай (1)
Beijing Children's Hospital, Capital Medical University
Beijing
Дания (1)
Rigshospitalet Glostrup
Glostrup Municipality
Финландия (1)
Helsingin Yliopistollinen Keskussairaala
Helsinki
Франция (1)
CHU Montpellier
Montpellier
Израел (1)
The Chaim Sheba Medical Center
Ramat Gan
Италия (1)
Arcispedale S. Anna Ferrara
Ferrara
Япония (1)
Kyushu University Hospital
Fukuoka
Южна Корея (1)
Seoul National University Bundang Hospital
Gyeonggi-do
Испания (1)
Hosp. Univ. de Bellvitge
Barcelona
Швейцария (1)
University Hospital Basel, Eye Clinic/Institute of Molecular and Clinical