Scientists track kidney disease progression in rare genetic disorder

NCT ID NCT01022957

First seen Nov 20, 2025 · Last updated Jun 23, 2026 · Updated 26 times

Summary

This study followed 150 people with nephronophthisis, a rare genetic kidney disease, to see how kidney and other organ damage progresses over time. Researchers looked at patients with specific gene mutations to better understand the disease's long-term effects. The goal was to improve care and help families anticipate complications.

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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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Contacts and locations

Locations

  • Hopital Necker

    Paris, 75015, France

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 help doctors predict and manage complications of nephronophthisis more effectively.

What could go wrong

This is an observational study, not a treatment trial. It will not test any new therapy, so it cannot directly lead to a cure or symptom relief.

Conditions

The condition(s) this trial relates to.

nephronophthisis 1

As listed by the trial registrant

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