Using enzyme replacement therapy to treat a rare metabolic disorder in children

Proof-of-concept for the use of enzyme replacement therapy as a lifesaving treatment for sphingosine phosphate lyase insufficiency syndrome

NIH-funded research University of California, San Francisco · NIH-10938964

This study is looking into a rare and serious condition called sphingosine phosphate lyase insufficiency syndrome (SPLIS) that mainly affects kids, and it aims to find a new treatment using enzyme replacement therapy to help improve their health and quality of life.

Quick facts

Grant typeR21 grant
Study typeNIH-funded research
Funding institutionUniversity of California, San Francisco NIH-funded
Lab location1 site (San Francisco, United States)
Project IDNIH-10938964 on NIH RePORTER

What this research studies

This research focuses on a rare and often fatal metabolic disorder known as sphingosine phosphate lyase insufficiency syndrome (SPLIS), which primarily affects children. The study aims to develop enzyme replacement therapy as a potential lifesaving treatment for this condition, which leads to severe kidney failure and other serious health issues. Researchers will investigate the underlying biology of SPLIS and explore how restoring the function of a specific enzyme can improve patient outcomes. By leveraging their extensive experience in sphingolipid metabolism, the team hopes to create targeted therapies that could significantly enhance the quality of life for affected individuals.

Who could benefit from this research

Good fit: Ideal candidates for this research are children diagnosed with sphingosine phosphate lyase insufficiency syndrome.

Not a fit: Patients with other metabolic disorders unrelated to sphingosine phosphate lyase insufficiency syndrome may not benefit from this research.

Why it matters

Potential benefit: If successful, this research could provide a new treatment option that may save the lives of children suffering from SPLIS.

How similar studies have performed: While enzyme replacement therapies have shown promise in other metabolic disorders, this specific approach for SPLIS is novel and has not been extensively tested.

Where this research is happening

San Francisco, United States

Researchers

About this research

  1. This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
  2. Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
  3. For full project details, budget, and progress reports, visit the official NIH RePORTER page below.
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.