545 - Downstream Revenue Generated by Hereditary Hemorrhagic Telangiectasia Screening at a Multidisciplinary Center of Excellence

Purpose: To assess the financial contribution generated by downstream screening and subsequent referrals and/or interventions including IR treatments of patients with Hereditary Hemorrhagic Telangiectasia (HHT) at a designated HHT Center of Excellence (CoE).

Materials and Methods: This retrospective cohort study used clinical and billing data from 325 patients seen at the Johns Hopkins HHT CoE from 1/2021 to 7/2025 with a minimum of one month of follow-up between consult and time of data collection. Adult and pediatric patients with confirmed or suspected HHT underwent initial and/or repeat protocolized testing were included. Screening, referrals and interventions followed Cure HHT guidelines.

Downstream revenue was defined as any billable service after initial consult by specialty providers in the CoE. All imaging studies were recorded and included diagnostic imaging and IR procedures. Current Procedural Terminology (CPT) codes were extracted from electronic medical records and converted into Work Relative Value Units (wRVUs) per Centers of Medicare and Medicaid Services guidelines. Laboratory test CPT codes were converted to revenue dollars using the Clinical Laboratory Fee Schedule.

Results: Preliminary analysis demonstrated that screening for HHT at the CoE generated 876.99 wRVUs from referrals, 170.68 wRVUs from imaging services, and $6790.31 in lab testing revenue from 1/2021 to 7/2025. Screening generated 6.63±5.56 total wRVUs and $107.78±44.93 from lab testing per patient. Pediatric patients (n=22) accounted for 7.4% of referral wRVUs, 20.0% of imaging wRVUs, and 3.9% of lab testing revenue. These may represent a conservative estimate of revenue and do not include wRVUs generated by inpatient admissions.

Conclusion: Protocolized screening of HHT patients at a CoE generates measurable institutional value through wRVUs while supporting the specialized care of patients with a rare disease, of which IR has a central role. As HHT is underfunded, identifying sustainable financial models is essential to preserve comprehensive care programs. Future analyses will assess cost avoidance tied to early detection of complications from HHT such as stroke and anemia.