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Study identifier: NCT04885179 Synced from ClinicalTrials.gov · July 29, 2026
● Recruiting

SPL Insufficiency Syndrome (SPLIS)/NPHS14: a SPLIS Observational Study and Patient Registry (International)

Condition: Sphingolipidoses · Enzyme Deficiency  ·  Sponsor: University of California, San Francisco

PhaseN/A
Planned participants120
Who can joinAll sexes, N/A to no upper limit
Healthy volunteersYes

About this study

This protocol aims to gather information about sphingosine phosphate lyase insufficiency syndrome (SPLIS), also known as NPHS14, and to create a SPLIS patient registry. Medical records, radiological and pathology results, blood test results, and genetic information will be collected. Samples of blood, cheek cells, urine and stool may be collected for analysis. If a skin biopsy has been performed for medical care, cells from the biopsy may be analyzed. No treatment or other intervention is involved in this study. However, the effect of treatments administered by the patient's physician may be detected and monitored based on changes in the blood or urine.

This description comes directly from the study's public registry record.

Talk to the study team

Julie D Saba, MD, PhD  ·  510-414-6317  ·  Julie.Saba@ucsf.edu

Joanna Y Lee, PhD  ·  510-590-8292  ·  Joanna.Lee@ucsf.edu

Always discuss trial participation with your own doctor first.

Locations (1)

University of California San FranciscoSan Francisco, California, United StatesRecruiting

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Source record: clinicaltrials.gov/study/NCT04885179