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Global Patient Registry of Inherited Retinal Diseases

Join our Global Registry for Inherited Eye Conditions Research.

Recruiting
3 years and older
All
Phase N/A
Global Patient Registry of Inherited Retinal Diseases

Inherited Retinal Diseases (IRD) affect the eyes and can be passed down from parents to children. This study aims to learn more about IRDs by observing people with these conditions over time. The study involves people who have signs or symptoms of IRDs or have changes in their retina seen through special imaging tests. It also includes those with genetic variants linked to specific IRDs, like X-Linked Retinitis Pigmentosa (XLRP) and Achromatopsia (ACHM). Participants need to agree to join the study and be able to undergo vision and retinal tests. Caregivers of these participants can also join the study if they are over 18, have consent from the participant, and agree to the study terms.

  • Participants must not be involved in other IRD-related treatment trials.
  • Caregivers with their own IRD diagnosis or symptoms cannot join.
  • Participation requires informed consent and may involve multiple visits.
Study details
    Inherited Retinal Diseases

NCT05957276

Janssen Research & Development, LLC

8 March 2025

Step 1 Get in touch with the nearest study center
What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
  • Sign up as volunteer  to help accelerate the development of new treatments and to get notified about similar trials.

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Learn more about clinical trials

What is a clinical trial?

A clinical trial is a study designed to test specific interventions or treatments' effectiveness and safety, paving the way for new, innovative healthcare solutions.

Why should I take part in a clinical trial?

Participating in a clinical trial provides early access to potentially effective treatments and directly contributes to the healthcare advancements that benefit us all.

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The duration of clinical trials varies. Some trials last weeks, some years, depending on the phase and intention of the trial.

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Compensation varies per trial. Some offer payment or reimbursement for time and travel, while others may not.

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Clinical trials follow strict ethical guidelines and protocols to safeguard participants' health. They are closely monitored and safety reviewed regularly.
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