Low-Dose Sirolimus for the Treatment of RUNX1 Familial Platelet Disorder
Start Date
10/5/2026
Completion Date
12/31/2030
Summary
This phase I trial studies the safety and side effects of low-dose sirolimus in treating patients with RUNX1 familial platelet disorder (FPD). RUNX1-FPD is a rare inherited disorder with symptoms such as mild to moderately low platelet count, abnormal platelet function, and an increased risk of developing cancers like myelodysplastic syndrome (MDS) and acute myeloid leukemia (AML). It is caused by changes (variants) in the RUNX1 gene that is passed down (inherited) from an affected parent. Sirolimus is typically given to help prevent organ rejection in patients receiving kidney transplants. However, sirolimus may also be able to prevent RUNX1-FPD from progressing to cancers like MDS and AML by targeting another protein called mTORC1. Sirolimus may be a safe treatment for patients with RUNX1-FPD.
Detailed Description
PRIMARY OBJECTIVE: I. Evaluate the safety and tolerability of low-dose sirolimus in patients with RUNX1 familial platelet disorder (RUNX1-FPD). SECONDARY OBJECTIVES: I. Evaluate platelet counts. II. Evaluate changes in somatic mutation variant allele frequency (VAF). III. Evaluate somatic mutation acquisition (i.e., mutation burden). IV. Evaluate the change in platelet function. V. Evaluate the change from baseline in bleeding score (International Society on Thrombosis and Haemostasis Bleeding Assessment Tool \[ISTH-BAT\]). VI. Evaluate the change in mTORC1 downstream signaling. EXPLORATORY OBJECTIVES: I. Evaluate the rescue of elevated cytokine profiles. II. Evaluate the reversal of myeloid skewing using colony formation assay. III. Evaluate monocytes using clinical flow cytometry. IV. Evaluate changes in patient-reported quality of life (QoL) outcomes measures (e.g., Patient-Reported Outcomes-Common Terminology Criteria for Adverse Events \[PRO-CTCAE\]). V. Determine the pharmacokinetics of sirolimus in participants with RUNX1-FPD. VI. Evaluate the correlation between sirolimus trough levels and each endpoint. VII. Make bone marrow smears and bone marrow biopsy slides. VIII. Evaluate the cellularity of bone marrow after study treatment. OUTLINE: Patients receive sirolimus orally (PO) once daily (QD) on days 1-168 in the absence of disease progression or unacceptable toxicity. Patients also undergo blood sample collection and bone marrow biopsy and/or aspiration throughout the study. After completion of study treatment, patients are followed for 6 months.
Eligibility Criteria
Age Range: 18 years to No maximum
Interventions
Biospecimen Collection
Bone Marrow Aspiration
Bone Marrow Biopsy
Questionnaire Administration
Sirolimus
Conditions
Locations
OHSU Knight Cancer Institute
Portland, Oregon 97239
United States