New registry aims to unlock secrets of Ultra-Rare SPLIS disease
NCT ID NCT04885179
First seen Jun 24, 2026 · Last updated Jun 27, 2026 · Updated 1 time
Summary
This study collects medical and genetic information from people with SPLIS, a rare condition caused by a faulty enzyme. Researchers will track survival and when kidney problems start. No treatments are given, but the registry may help future research.
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 registry could help doctors better understand SPLIS and improve future care for patients.
- What could go wrong
- This is an observational study with no treatment, so it won't directly help participants. It may take years to gather enough data to draw meaningful conclusions.
This is an AI summary of the original study and may miss details. Read our disclaimer.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
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University of California San Francisco
RECRUITINGSan Francisco, California, 94143, United States
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