New study tracks eye disease in rare genetic disorder

NCT ID NCT06190626

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study follows 30 people with Zellweger Spectrum Disorder over 5 years to understand how their vision changes over time. Participants will have yearly vision tests, physical exams, and blood work. The goal is to define the course of retinal degeneration and find the best ways to monitor it.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

What this could lead to

If successful, this study could provide doctors and families with clear information on how vision loss progresses in Zellweger Spectrum Disorder and which tests best track it.

What could go wrong

This is an observational study with only 30 participants, so findings may not apply to all patients. It does not test any treatment.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Conditions

The condition(s) this trial relates to.

peroxisome biogenesis disorder retinal disorder Zellweger spectrum disorders

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • Eye Institute of Alberta

    RECRUITING

    Edmonton, Alberta, T5H 3V9, Canada

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

  • Research Institute-McGill University Health Center

    RECRUITING

    Montreal, Quebec, H4A 3J1, Canada

    Contact Email: •••••@•••••

    Contact

  • University of Rochester Medical Center/Flaum Eye Institute

    RECRUITING

    Rochester, New York, 14642, United States

    Contact

    Contact Email: •••••@•••••