Trial Now Recruiting: Universal Rare Gene Study: A Registry and Natural History Study of Retinal Dystrophies Associated With Rare Disease-Causing Genetic Variants (NCT05589714)
WHY IT MATTERS
If you have an inherited retinal disease with a rare genetic variant, enrolling in this registry could help researchers understand your condition better and speed up development of future treatments while contributing to a global database of genetic information.
Researchers are looking for 1,500 people with inherited eye diseases caused by rare genetic changes to join a study. The study has two parts: first, they'll collect genetic information and eye health data from participants, and second, they'll follow some participants over time to understand how these eye diseases progress. This international study is now accepting new participants.
NCT ID: NCT05589714 Status: RECRUITING Conditions: Inherited Retinal Degeneration, Retinitis Pigmentosa Enrollment: 1500 Sponsor: Jaeb Center for Health Research Summary: This is an international, multicenter study with two components: Registry * A standardized genetic screening and a prospective, standardized, cross-sectional clinical data collection * Enrollment is open to all genes on the RD Rare Gene List Natural History Study * A prospective, standardized, longitudinal Natural History Study * Enrollment opens gene-by-gene, based on funding and within-gene Registry enrollment The study objectives are as follows. Registry Objectives 1. Genotype Character
YOU CAN ACT ON THIS
Check if you have a confirmed genetic diagnosis for inherited retinal degeneration or retinitis pigmentosa, then contact the study team through clinicaltrials.gov (NCT05589714) to learn about enrollment at sites near you.