Standard of Care for Inherited Retinal Disease

(EYERD Registry Trial)

Not currently recruiting at 90 trial locations
SC
Overseen ByStudy Contact
Age: Any Age
Sex: Any
Trial Phase: Academic
Sponsor: Janssen Research & Development, LLC
No Placebo GroupAll trial participants will receive the active study treatment (no placebo)

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?

JR

Janssen Research & Development, LLC Clinical Trial

Principal Investigator

Janssen Research & Development, LLC

Are You a Good Fit for This Trial?

Inclusion 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
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Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Baseline Assessment

Initial assessment of participants' visual acuity, visual field, and other baseline characteristics

1-2 weeks

Longitudinal Monitoring

Participants are monitored for changes in visual acuity, visual field, and other health metrics

Up to 8 years

Follow-up

Participants are monitored for safety and effectiveness after the main monitoring period

4 weeks

What Are the Treatments Tested in This Trial?

Interventions

  • Standard of Care

How Is the Trial Designed?

1

Treatment groups

Experimental Treatment

Group I: Participants With Inherited Retinal Diseases (IRDs)Experimental Treatment1 Intervention

Find a Clinic Near You

Who Is Running the Clinical Trial?

Janssen Research & Development, LLC

Lead Sponsor

Trials
1,022
Recruited
6,408,000+
Joaquin Duato profile image

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 profile image

Dr. Jijo James, MD

Janssen Research & Development, LLC

Chief Medical Officer since 2014

MD from St. Johns Medical College, MPH from Columbia University