Abstract PR002: Breaking Barriers in Rare Cancer Research: Patient-Partnered Research via Social Media as a Model for Generating Evidence in Granulosa Cell Tumor of the Ovary

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Abstract Background: Granulosa cell tumors (GCT) of the ovary account for ∼ 5% of malignant ovarian cancers. As with many rare cancers, the evidence base for treatment is weak, and conventional research approaches face serious barriers: small patient populations, geographic dispersion, and difficulty recruiting adequate sample sizes. Online patient communities represent an underutilized resource for overcoming these barriers through genuine patient and public involvement (PPI). We describe a program of patient-partnered research conducted with the multinational closed GCT Survivor Sisters (GCT-SS) Facebook group (∼1800 members) and examine what this model can deliver to the rare cancer research community. Methods: Group administrators and researchers co-designed, implemented and analyzed two surveys of GCT-SS members1,2. Survey 1 (2014 -2019; n=743) captured diagnosis, treatment and follow-up experiences. Survey 2 (2023 -2024; n=1017) focused on radiotherapy use and patient-reported impacts, including free-text responses analyzed thematically, with comparisons across six international regions. We reflect on the PPI process itself, how consumer partnership shaped research questions, enabled recruitment at a scale not otherwise achievable, and produced findings directly meaningful to patients. Results: The program generated one of the largest international datasets on GCT, addressing questions consumers themselves identified as priorities: shifting chemotherapy regimens, the association of tumor rupture with recurrence, marked international variation in radiotherapy use for recurrent disease (Australia/NZ 36% vs UK 14%, p=.019), and patient-reported impacts of radiotherapy, including themes of restored quality of life and hope alongside severe long-term toxicities, that are absent from clinical trial literature. Critically, these findings were only possible because an engaged global patient community could be reached through the GCT Survivor Sisters Facebook group, and because consumers were genuine partners in shaping what was asked and how. Conclusions: Patient-partnered research via organically formed social media communities, in this case a closed, private Facebook group providing a safe and verified membership environment, can generate clinically meaningful, internationally representative evidence in rare cancers where conventional approaches fall short. Co-design ensures research addresses what patients need to know; the private group model provides an engaged, patient-driven cohort; and bidirectional researcher-patient collaboration produces richer findings than researcher-led studies alone. This model is replicable across other rare cancers and offers a blueprint for breaking the evidence barrier that leaves patients and clinicians without the guidance they need. 1. White VM, Alexiadis M, et. al.. Cancer. 2023;129(14):2224-34. 2. White VM, Langdale LM, et. al., S. Gynecologic oncology. 2025;203:112-8. Citation Format: Simon Chu, Victoria M. White, Linda M. Langdale, Kim D. Eroh, M Kaye. Ackermann, Susan Rodgers, Natasha E. Armour, Maria Alexiadis, Thomas W. Jobling, Peter J. Fuller. Breaking Barriers in Rare Cancer Research: Patient-Partnered Research via Social Media as a Model for Generating Evidence in Granulosa Cell Tumor of the Ovary [abstract]. In: Proceedings of the AACR Special Conference in Cancer Research: Breaking Barriers in the Fight against Rare Cancers; 2026 Jul 18-20; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Res 2026;86(14_Suppl):Abstract nr PR002.

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