Patient and Family Demographics in the Momcology Pediatric Cancer Patient Advocacy Organization

Abstract

Background: Momcology is a US-based patient advocacy organization that provides support for families of children with cancer. This study describes Momcology for researchers by detailing the demographic, clinical, and socioeconomic (socioeconomic status [SES]) data within its registry and comparing it to the National Surveillance, Epidemiology, and End Results (SEER) dataset. This study contextualizes differences within the cohort and highlights opportunities for similar organizations to improve research partnerships. Procedure: In 2020, Momcology transitioned its membership registry to Research Electronic Data Capture (REDCap), a secure, web-based platform designed for standardized data collection and research collaboration. Caregivers of children with cancer completed surveys capturing diagnosis, demographics, and socioeconomic information. We compared children aged 0–19 years diagnosed between 2000 and 2020 in the Momcology registry with cases from SEER-22 for demographic and clinical variables and SEER-18 (2006–2018) for SES. Multivariable logistic regression was used to examine associations between registry membership and age, sex, race/ethnicity, cancer subtype, and SES. Results: Among 4,305 Momcology patients and 156,407 SEER cases, Momcology children were younger at diagnosis, more likely to be non-Hispanic White, and from higher SES backgrounds. Momcology showed a substantially greater proportion of leukemias compared to SEER. Additionally, the REDCap database enables efficient data queries and targeted family outreach based on specific circumstances. Conclusion: Momcology's membership is large and includes all pediatric cancer types and demographic backgrounds. Despite representation gaps in certain populations, Momcology maintains a presently characterized and active cohort that facilitates connections between families and researchers for community-based participatory research and caregiver support initiatives within pediatric oncology.