Key Findings from Phase II of the SPAGN Priority Setting Partnership published 📝

The Sarcoma Patient Advocacy Global Network (SPAGN) has published the results of the second phase of its Priority Setting Partnership (PSP), focusing on identifying research and patient advocacy priorities in sarcoma care, in “BMC Cancer”. This initiative is groundbreaking as it actively involves patients and carers in shaping the research agenda, ensuring their voices are heard and their needs are met.

In this phase, a global survey gathered responses from 671 sarcoma patients and carers. The top research priorities identified were understanding the causes of sarcoma, improving prognosis and risk of recurrence, focusing on specific sarcoma subtypes, exploring the role of immunotherapy and targeted therapies, and examining hereditary aspects.

For patient advocacy, the primary focus areas highlighted were enhancing the diagnostic process, improving access to tumor DNA analysis, and establishing an international sarcoma registry.

The survey results have clear implications for the sarcoma community. By integrating the perspectives of patients and carers, the research priorities are more aligned with the actual needs of those affected by sarcoma. This collaborative effort between patients, carers, and researchers not only guides future research projects but also assists funding agencies in assessing the relevance of proposed studies. Moreover, it empowers patient advocates to better represent the needs and concerns of the sarcoma community.

The publication of these findings marks a significant step forward in sarcoma care and research. By continuing to involve patients and carers in the research process, SPAGN is setting a precedent for patient-centered research that can lead to more effective and targeted treatments.

We encourage you to read the full publication in “BMC Cancer” for a comprehensive understanding of the survey and its impactful results.