Standard of Care for Inherited Retinal Disease
(EYERD Registry Trial)
What You Need to Know Before You Apply
What is the purpose of this trial?
This trial focuses on understanding Inherited Retinal Diseases (IRD), which affect the eyes and can lead to vision loss. Researchers aim to learn how these diseases progress over time to improve patient care. The study includes individuals with a genetic diagnosis of X-linked retinitis pigmentosa or achromatopsia, both of which cause vision problems. Those with noticeable symptoms or specific retinal changes are well-suited for this trial. As an unphased trial, it offers participants the chance to contribute to foundational research that could lead to better treatments in the future.
Will I have to stop taking my current medications?
The trial information does not specify whether you need to stop taking your current medications. It's best to discuss this with the trial coordinators or your doctor.
Why are researchers excited about this trial?
Researchers are excited about this registry because it could transform our understanding of inherited retinal diseases (IRDs) like X-linked retinitis pigmentosa (XLRP) and Achromatopsia (ACHM). Unlike treatments that aim to manage symptoms, this registry gathers detailed genetic and clinical data from a diverse group of patients. This comprehensive approach is expected to uncover new insights about disease progression and potential treatment targets. By mapping out genetic variations and their effects on the retina, the registry could pave the way for personalized therapies and more effective interventions in the future.
Who Is on the Research Team?
Janssen Research & Development, LLC Clinical Trial
Principal Investigator
Janssen Research & Development, LLC
Are You a Good Fit for This Trial?
Inclusion Criteria
Timeline for a Trial Participant
Screening
Participants are screened for eligibility to participate in the trial
Baseline Assessment
Initial assessment of participants' visual acuity, visual field, and other baseline characteristics
Longitudinal Monitoring
Participants are monitored for changes in visual acuity, visual field, and other health metrics
Follow-up
Participants are monitored for safety and effectiveness after the main monitoring period
What Are the Treatments Tested in This Trial?
Interventions
- Standard of Care
How Is the Trial Designed?
1
Treatment groups
Experimental Treatment
Adult and pediatric (greater than or equal to \[\>=\] 3 years) participants with a documented genetic diagnosis of X-linked retinitis pigmentosa (XLRP) or Achromatopsia (ACHM) and any signs or symptoms of IRD or documented retinal changes detected by imaging or electrophysiology.
Find a Clinic Near You
Who Is Running the Clinical Trial?
Janssen Research & Development, LLC
Lead Sponsor
Joaquin Duato
Janssen Research & Development, LLC
Chief Executive Officer since 2022
MBA from ESADE, Master of International Management from Thunderbird School of Global Management
Dr. Jijo James, MD
Janssen Research & Development, LLC
Chief Medical Officer since 2014
MD from St. Johns Medical College, MPH from Columbia University
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