ACTIVE_NOT_RECRUITING

Global Patient Registry of Inherited Retinal Diseases

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Conditions

Inherited Retinal Diseases

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Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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

Quick Facts

Study Start:2023-08-31
Study Completion:2026-07-03
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:ACTIVE_NOT_RECRUITING

Study ID

NCT05957276

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.

Ages Eligible for Study:3 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Not specified
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * 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
  2. * 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)
  3. * Participant or legally acceptable representative has provided informed consent (and participant assent, when applicable) in accordance with local requirements
  4. * Participant is able to have relevant visual and/or retinal assessments performed
  5. * Caregiver has consent from the associated participant to participate in the study, or participant assent and consent from their legally acceptable representative
  6. * Male or female aged greater than or equal to (\>=)18 years
  7. * Identified by an enrolled participant (or their legally acceptable representative\*) as a primary caregiver
  8. * Caregiver has provided informed consent in accordance with local requirements
  1. Pregnancy or breastfeeding
  2. Severe psychiatric disorders
  3. Active substance abuse
  4. Unstable medical conditions
  5. Inability to comply with study requirements

Contacts and Locations

Principal Investigator

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

Study Locations (Sites)

University of Alabama Birmingham
Birmingham, Alabama, 35294
United States
University of Arkansas for Medical Sciences
Little Rock, Arkansas, 72205
United States
University of Southern California
Los Angeles, California, 90033
United States
UCSF
San Francisco, California, 94143
United States
Bascom Palmer Eye Institute
Miami, Florida, 33136
United States
Emory University
Atlanta, Georgia, 30322
United States
University of Iowa
Iowa City, Iowa, 52242
United States
Ochsner Medical Center
New Orleans, Louisiana, 70121
United States
John Hopkins Hospital
Baltimore, Maryland, 212051832
United States
Univ of Michigan Medical Center
Ann Arbor, Michigan, 48105
United States
University Of Minnesota Medical Center
Minneapolis, Minnesota, 55455
United States
University of Rochester Medical Center
Rochester, New York, 14642
United States
Cleveland Clinic
Cleveland, Ohio, 44195
United States
Oregon Health And Science University
Portland, Oregon, 97239
United States
UPMC
Pittsburgh, Pennsylvania, 15213
United States
Retina Consultants of Texas
Bellaire, Texas, 77401
United States
Baylor College of Medicine
Houston, Texas, 77030
United States
University of Texas Houston
Houston, Texas, 77204
United States

Collaborators and Investigators

Sponsor: Janssen Research & Development, LLC

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

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2023-08-31
Study Completion Date2026-07-03

Study Record Updates

Study Start Date2023-08-31
Study Completion Date2026-07-03

Terms related to this study

Additional Relevant MeSH Terms

  • Inherited Retinal Diseases