(P 225) GLOBAL REGISTRY OF SOLITARY FIBROUS TUMORS (SFT): INTEGRATING CLINICAL, MOLECULAR, AND ENVIRONMENTAL DATA- THE HOROWITZ SFT INITIATIVE (HSFTI)

Objective: Solitary Fibrous Tumors (SFTs) are rare, accounting for ~2% of all sarcomas. While most are benign, 10–40% exhibit aggressive behavior, recurrence, or metastasis. Epidemiological and molecular research remains limited. Few studies address key features such as the most significant NAB2-STAT6 fusion or risk factors, and there is only one available cell line derived from a mouse PDX model. To address these gaps, the HSFTI was launched on April 12, 2023.

Objectives:
Primary: Establish a comprehensive biorepository of tumor and biological samples from patients with SFTs.
Secondary: Collect survey data on risk factors and medical and family history to identify statistically significant associations; maintain clinical and pathological data to support molecular and translational research.

Methods: Single-site, longitudinal registry with adults (≥18 years) with confirmed SFT. The goal is to enroll 650 participants (500 nationally and 150 internationally) over a 10-year period. Approved by the University of Miami IRB, the protocol is being amended to support global expansion.
Data collection components:
Survey: A detailed, IRB-approved survey examining environmental, occupational, and lifestyle exposures that may correlate with SFT. Currently available in English, Spanish, and Haitian Creole, with additional languages to be added to support global participation.
Biorepository and Medical Data: A linked biorepository will collect tumor tissue and blood samples. Medical records will be reviewed to obtain longitudinal clinical data and support translational research.
Global accessibility: The registry is designed for international collaboration, with an interactive data-sharing platform hosted on the Sylvester Comprehensive Cancer Center website. The site will share global SFT research updates, including those from the Horowitz Initiative.

Results: The registry and website will be live and enrolling by CTOS. The use of recruitment materials such as flyers, mass communication to sarcoma oncologists, and direct communication with patients via existing SFT support groups on social media, should allow for rapid enrollment once site is activated. Enrollment and preliminary demographics updates will be presented at CTOS.

Conclusion: This first-of-its-kind global SFT registry will serve as a foundational resource to expand understanding of disease biology, evaluate environmental associations, and support the discovery of novel diagnostics and therapies, ultimately improving outcomes in this rare malignancy.