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Global Patient Registry of Inherited Retinal Diseases
Global Patient Registry of Inherited Retinal Diseases

NCT05957276

CompletedN/A

Sponsor: Janssen Research & Development, LLC

Conditions: Inherited Retinal Diseases

Interventions: Standard of Care

Countries: United States, Australia, Austria, Belgium, Brazil, Canada, China, Denmark

The purpose of this study is to better understand the natural history of Inherited Retinal Disease (IRD) and help inform patient management.

Eligibility overview

Sex: ALL

Age: 3 Years to —

Study type: OBSERVATIONAL

Eligibility criteria
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 (75)
  • Birmingham, Alabama, United States
  • Little Rock, Arkansas, United States
  • Los Angeles, California, United States
  • San Francisco, California, United States
  • Miami, Florida, United States
  • Atlanta, Georgia, United States
  • Iowa City, Iowa, United States
  • New Orleans, Louisiana, United States
  • Baltimore, Maryland, United States
  • Ann Arbor, Michigan, United States
  • Minneapolis, Minnesota, United States
  • Rochester, New York, United States
  • Cleveland, Ohio, United States
  • Portland, Oregon, United States
  • Pittsburgh, Pennsylvania, United States
  • Bellaire, Texas, United States
  • Houston, Texas, United States
  • Houston, Texas, United States
  • East Melbourne, Australia
  • Nedlands, Australia
  • Westmead, Australia
  • Linz, Austria
  • Vienna, Austria
  • Ghent, Belgium
  • Belo Horizonte, Brazil
  • Pinheiros, Brazil
  • São Paulo, Brazil
  • São Paulo, Brazil
  • Toronto, Ontario, Canada
  • Beijing, China
  • + 45 more on CT.gov