Evaluating a potential treatment for ROSAH Syndrome using blood samples

A Phase 0 Study to Evaluate DF-003 in ex Vivo Assays Using Peripheral Blood Mononuclear Cells (PBMC) From Subjects With Retinal Dystrophy, Optic Nerve Edema, Splenomegaly, Anhidrosis and Headache (ROSAH) Syndrome.

Observational Hospices Civils de Lyon · NCT05319132

This study is testing whether a new treatment can help reduce inflammation in blood cells from people with ROSAH Syndrome who have a specific genetic mutation.

Quick facts

Study typeObservational
Enrollment4 (estimated)
Ages18 Years and up
SexAll
SponsorHospices Civils de Lyon Academic / other
Locations5 sites (Lyon, Auvergne-Rhône-Alpes and 4 other locations)
Trial IDNCT05319132 on ClinicalTrials.gov

What this trial studies

This observational study aims to evaluate the effects of an ALPK1 inhibitor, DF-003, on peripheral blood mononuclear cells (PBMCs) from patients diagnosed with ROSAH Syndrome who carry the T237M mutation. The study will expose these cells to DF-003 or a placebo to assess changes in inflammatory gene expression and related biomarkers. By understanding the impact of the inhibitor on these cells, researchers hope to validate the hypothesis that the T237M mutation in ALPK1 contributes to the inflammatory symptoms associated with ROSAH Syndrome.

Who should consider this trial

Good fit: Ideal candidates for this study are adults over 18 years old who have been diagnosed with ROSAH Syndrome and confirmed to have the T237M mutation.

Not a fit: Patients who do not have the T237M mutation or are under legal protection may not benefit from this study.

Why it matters

Potential benefit: If successful, this study could lead to a new therapeutic approach for managing ROSAH Syndrome and its associated inflammatory symptoms.

How similar studies have performed: While the specific approach of using DF-003 in ROSAH Syndrome is novel, the investigation of ALPK1 inhibitors in related inflammatory conditions has shown promise in other studies.

Eligibility criteria

Show full inclusion / exclusion criteria
Inclusion Criteria:

* Male or female aged over 18
* Patient with ROSAH syndrome with the confirm T237M mutation

Exclusion Criteria:

* person under legal protection or under protectives measures
* person unable to express consent
* person in emergency situation (vital or not)
* person infected by Human Immunodeficiency Virus and/or Hepatitis B Virus and/or Hepatitis C Virus

Where this trial is running

Lyon, Auvergne-Rhône-Alpes and 4 other locations

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions Unrecognized ConditionROSAH Syndrome.
Last reviewed 2026-06-09 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.