Priya Marathe, MD (Memorial Sloan Kettering Cancer Center, New York, USA)
Priya Marathe, MD (Memorial Sloan Kettering Cancer Center, New York, USA)
Year Awarded: 2025
Amount: $60,000
Study Length: 2 years
Dr. Priya Marathe was awarded $60,000 to conduct a two-year study examining disparities in Erdheim–Chester Disease diagnosis and treatment with respect to race and socioeconomic status. The study will use a multi-institutional cohort to measure differences in care and expand the MSK-BRIDGE program to improve access to expert care and clinical trials for underrepresented patients.
The survival of patients with ECD has improved significantly with the increasing use of targeted therapies. Certain challenges in treating ECD still remain; these challenges include delay in diagnosis and lack of access to expert ECD care, particularly for patients from underrepresented racial or socioeconomic groups. There is a lack of understanding of disparities in ECD diagnosis and treatment with respect to race and socioeconomic status. We propose a two-stage study to address these critical questions. The study will first use a multi-institutional cohort of patients with ECD to measure differences in diagnosis and treatment for patients based on their race or socioeconomic status. Next, we will expand to ECD a current program (MSK-BRIDGE) that makes it easier for patients from underrepresented groups to access expert care and clinical trials. The results from this study will identify patients with ECD who are most at risk for are having a delayed diagnosis or other disparities in their care and test the MSK-BRIDGE initiative to see if it is effective in increasing access to care for these patients. Ultimately, this study will allow clinicians and the ECD community to provide better, more equitable care for patients with the disease. The results will also lead to the development of tailored interventions for improving care for all patients with ECD.
Interim Report (March 2026)
Original Objectives
Despite treatment advances, timely diagnosis and access to specialized care remain challenges for Erdheim-Chester Disease (ECD) and other histiocytic neoplasms (HN). A critical knowledge gap remains regarding disparities in ECD/HN diagnosis and treatment based on demographic factors including race, age diagnosis, and local resource level. The overarching goal of this study was to examine whether all patients with ECD and other histiocytoses are diagnosed promptly and to identify disparities in diagnosis or treatment with the aim to inform providers across the Care Center Network and promote equitable care for all patients with ECD.
The specific objectives of this study are two-fold. The first is to characterize clinical disparities in the diagnosis and treatment of patients with ECD/HN with respect to race, age at diagnosis, and local resource level by utilizing the MSK Registry and a national multi-institutional cohort.
The second objective is to pilot an expansion of MSK-BRIDGE, an intervention tailored to reduce financial and logistic barriers for patients with rare cancers, to patients with suspected or confirmed ECD/HN.
Accomplishments
We have thus far been able to characterize clinical disparities in the diagnosis and treatment of patients with ECD/HN with respect to race, age at diagnosis, and local resource level. We began by creating a cohort of patients seen at MSK, the University of Michigan, and the University of Alabama at Birmingham between January 2020 and December 2023 with a diagnosis of HN (including ECD, Langerhans cell histiocytosis (LCH) and Rosai-Dorfman Disease (RDD)). This cohort included 545 patients with HN from 45 states in the United States. Demographic (race, sex, zip code, and age at HN diagnosis), clinical (diagnosis subtype, date of self-reported symptom onset, date of histologic diagnosis, date of first treatment, and BRAFV600 mutational status), and treatment-related data was collected. Area Deprivation Index (ADI) was used as a validated measure of neighborhood-level resources mapped to ZIP code using indicators of income, education, employment, and housing quality.
We found that local resource level was significantly associated with the clinical trajectory of patients with HN. Patients with HN from resource-poor areas were older at diagnosis. Non-White patients and patients with RDD were more likely to live in resource-poor areas. Patients from resource-poor areas experienced a longer time from symptom onset to diagnosis. Patients from resource-poor areas were also treated sooner and with more treatment modalities than patients from resource-rich areas. Additionally. patients with ECD were more likely to experienced delayed diagnosis than patients with other HN subtypes.
We have begun enrolling patients for the second objective of the study. Thus far, eight patients have been identified as being from an underrepresented group and potentially benefitting from assistance via MSK-BRIDGE. Specific patient assistance measures include: patient financial navigation (including assistance with transportation, meals, and/or short-term housing); assistance with insurance authorizations, social security benefits, or FMLA; referral to Immigrant Health for food pantry and SNAP benefits, and referral to cancer foundation grants.