NCT04885179 (SPLIS-OSPRI) is a clinical trial of no intervention in Sphingolipidoses, sponsored by University of California, San Francisco.

Who is sponsoring NCT04885179?

NCT04885179 is sponsored by University of California, San Francisco.

What drugs are being tested in NCT04885179?

Interventions in NCT04885179: no intervention.

What condition does NCT04885179 study?

NCT04885179 studies Sphingolipidoses, Enzyme Deficiency.

Is NCT04885179 still recruiting?

NCT04885179 is currently recruiting now. Last updated 24 October 2025.

Last reviewed 2025-10-24 · How we verify

NCT04885179: SPLIS-OSPRI

Name: Drug Landscape Pharmaceutical Database
Creator: Drug Landscape
Published: 2026-01-01
License: https://creativecommons.org/licenses/by/4.0/

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

Recruiting now Last updated 24 October 2025

What this trial tests

trial testing no intervention in Sphingolipidoses in 120 participants. Currently enrolling.

Timeline

22 April 2025

Primary endpoint
30 December 2026

30 December 2028

Quick facts

Lead sponsor	University of California, San Francisco
Status	Recruiting now
Study type	OBSERVATIONAL
Enrollment	120
Start date	22 April 2025
Primary completion	30 December 2026
Estimated completion	30 December 2028
Sites	1 location across United States

Drugs / interventions tested

no intervention

Conditions studied

Sphingolipidoses — all drugs for Sphingolipidoses →
Enzyme Deficiency — all drugs for Enzyme Deficiency →

Sponsor

University of California, San Francisco

Who can join

Eligibility, any sex, with Sphingolipidoses or Enzyme Deficiency. Patients with the condition only — healthy volunteers not accepted.

Sponsor's own description

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.

Publications & conference data

1 peer-reviewed publication reference this trial (live from Europe PMC):

Factors influencing survival in sphingosine phosphate lyase insufficiency syndrome: a retrospective cross-sectional natural history study of 76 patients.
Keller N, Midgley J, Khalid E, Lesmana H, et al · · 2024 · cited 3× · PMID 39334450 · DOI 10.1186/s13023-024-03311-w

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Verify against primary sources

ClinicalTrials.gov — authoritative US registry record
WHO ICTRP — international registry index
EU Clinical Trials Register
Sponsor press releases (Google)

Data sources for this page

Trial protocol + status: ClinicalTrials.gov NCT04885179 (US National Library of Medicine, public domain)
Publications: Europe PMC API search by NCT ID, retrieved 10 June 2026
Drug + disease cross-links: matched in real time against Drug Landscape's normalised drug + company + condition tables
Sponsor: as reported to ClinicalTrials.gov by University of California, San Francisco
Last refreshed: 24 October 2025

Drug Landscape aggregates and links these public records for informational use only. Always verify against the primary source before clinical or regulatory decisions. Canonical URL: https://druglandscape.com/trial/NCT04885179.

Primary sources · FDA · ClinicalTrials.gov · EMA · SEC EDGAR · ChEMBL · Wikidata · full sourcing