Summary

Eligibility
for people ages 3 years and up (full criteria)
Location
at UCSF
Dates
study started
completion around

Description

Summary

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

Official Title

Global Patient Registry of Inherited Retinal Disease

Keywords

Inherited Retinal Diseases, Retinal Diseases

Eligibility

You can join if…

Open to people ages 3 years and up

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

You CAN'T join if...

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

  • UCSF currently not accepting new patients, but might later
    San Francisco California 94143 United States
  • University of Southern California accepting new patients
    Los Angeles California 90033 United States
  • University of Texas Houston accepting new patients
    Houston Texas 77204 United States
  • Retina Consultants of Texas accepting new patients
    Bellaire Texas 77401 United States

Details

Status
accepting new patients at some sites,
but this study is not currently recruiting here
Start Date
Completion Date
(estimated)
Sponsor
Janssen Research & Development, LLC
ID
NCT05957276
Study Type
Observational
Participants
Expecting 7000 study participants
Last Updated