RECRUITING

CNGB1 and Allied Disorders

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

Mutations in the rod-expressed gene, cyclic nucleotide-gated channel beta subunit (CNGB1) and associated inborn errors in metabolism are causes of retinal disease that causes progressive loss of vision. Retinitis pigmentosa (RP) is a major cause of untreatable blindness associated with CNGB1 (CNGB1-RP). RP involves the death of photoreceptor cells that can be caused by mutations in a number of different genes. Treatment by gene therapy could prevent blindness in cases of inherited retinal dystrophies including RP. In the future RP due to mutations in CNGB1 may be treatable by gene therapy since this form of photoreceptor degeneration involves a slow loss of rod photoreceptor cells. This provides a wide window of opportunity for the identification of patients and initiation of treatment. Our efforts are directed toward developing gene therapy as a treatment. To this end, our objective is to better understand the disease process of CNGB1-RP and other allied inherited disorders so that we can develop clinical tests to measure the outcomes of treatment.

Official Title

Study of CNGB1 Retinitis Pigmentosa and Allied Hereditary Disorders

Quick Facts

Study Start:2019-03-14
Study Completion:2026-01
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT04639635

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:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Diagnosis of CNGB1-associated RP by study physician, who are trained retinal specialists in the university clinic
  2. * Must be able to commit to 4 follow-up study visits (3 years)
  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

Study Contact

Marilyn Rodriguez
CONTACT
781-632-0012
mr4428@cumc.columbia.edu

Principal Investigator

Stephen Tsang, MD, PhD
PRINCIPAL_INVESTIGATOR
Columbia University

Study Locations (Sites)

Dr. Stephen H. Tsang
New York, New York, 10032
United States
Wills Eye Hospital
Philadelphia, Pennsylvania, 19107
United States

Collaborators and Investigators

Sponsor: Columbia University

  • Stephen Tsang, MD, PhD, PRINCIPAL_INVESTIGATOR, Columbia University

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 Date2019-03-14
Study Completion Date2026-01

Study Record Updates

Study Start Date2019-03-14
Study Completion Date2026-01

Terms related to this study

Keywords Provided by Researchers

  • Retinitis Pigmentosa
  • CNGB1
  • Natural Progression

Additional Relevant MeSH Terms

  • Retinitis Pigmentosa Associated With CNGB1 Mutations