The HealthTree Cure Hub registry: A patient-centered, multicenter approach to advancing multiple myeloma care.

Abstract

e19569 Background: Multiple myeloma (MM) is the second most common hematologic malignancy, with an increasing incidence worldwide. Clinical registries provide valuable real-world insights into disease epidemiology, treatment patterns, and outcomes, serving as essential resources for research and clinical decision-making. The HealthTree CureHub Registry is a multicenter, patient-driven registry designed to collect and analyze longitudinal clinical and omic data to enhance treatment strategies and improve patient outcomes across multiple diseases. Methods: The HealthTree Cure Hub Registry is a digital health patient advocacy platform that harmonizes electronic health records and patient-reported outcomes for hematologic malignancies, currently for 7,917 patients, as of January 2025. Data collection includes, but is not limited to, demographics, diagnosis history, treatment regimens, and genetic markers. Patients voluntarily contribute their health information through the HealthTree platform through connections based on the FHIR standard, allowing continuous updates and integration with clinical and omic data across 380 unique facilities. Results: The distribution of the patients gathered in the registry includes 6456 (82%) diagnosed with MM, 949 (12%) with SMM, 438 (5.5%) with MGUS, and 73 (0.9%) with PCL. The median age at MM diagnosis is 60 years (IQR: 53–66), and the cohort comprises 58% female and 42% male patients. The registry includes comprehensive cytogenetic data, Among patients with available FISH data (n = 2542), the most common abnormalities included trisomies (44%), the most prevalent trisomies included trisomy 9 (25%), trisomy 11 (20%), trisomy 15 (18%), and trisomy 5 (11%). Deletion 13q showed in 40%, 1q21 additions (36%), which is frequently linked to poor prognosis and increased treatment resistance, and t(11;14) (2%), which is frequently linked to BCL-2 inhibition sensitivity. High-risk chromosomal translocations showed for t(4;14) in 12%, t(14;16) (6%) and t(14;20) (2%), additionally, del(17p) was found in 16% of patients. Conclusions: The HealthTree Cure Hub Registry serves as a comprehensive real-world data platform, supporting clinicians, researchers, and policymakers in understanding MM progression. By integrating patient-reported outcomes with clinical and genomic data, the registry enhances research capabilities and fosters personalized treatment strategies. Continued expansion and data curation will further strengthen its role in improving MM care worldwide.