Global Patient Registry of Inherited Retinal Diseases

Description

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

Conditions

Inherited Retinal Diseases

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Study Overview

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Study Details

Study overview

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

Global Patient Registry of Inherited Retinal Disease

Global Patient Registry of Inherited Retinal Diseases

Condition
Inherited Retinal Diseases
Intervention / Treatment

-

Contacts and Locations

Birmingham

University of Alabama Birmingham, Birmingham, Alabama, United States, 35294

Little Rock

University of Arkansas for Medical Sciences, Little Rock, Arkansas, United States, 72205

Los Angeles

University of Southern California, Los Angeles, California, United States, 90033

Iowa City

University of Iowa, Iowa City, Iowa, United States, 52242

New Orleans

Ochsner Medical Center, New Orleans, Louisiana, United States, 70121

Baltimore

John Hopkins Hospital, Baltimore, Maryland, United States, 212051832

Ann Arbor

Univ of Michigan Medical Center, Ann Arbor, Michigan, United States, 48105

Minneapolis

University Of Minnesota Medical Center, Minneapolis, Minnesota, United States, 55455

Rochester

University of Rochester Medical Center, Rochester, New York, United States, 14642

Cleveland

Cleveland Clinic, Cleveland, Ohio, United States, 44195

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • * 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
  • * 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

Ages Eligible for Study

3 Years to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

Janssen Research & Development, LLC,

Janssen Research & Development, LLC Clinical Trial, STUDY_DIRECTOR, Janssen Research & Development, LLC

Study Record Dates

2031-05-19