ASPIRE TROG 21.12: Australia's First Radiation Oncology Clinical Quality Registry for Patients With Sarcoma and Other Rare Cancers.

Abstract

Introduction: Sarcomas are rare, heterogeneous malignancies that require highly specialised multidisciplinary care and long-term follow-up due to the risk of late relapse and/or treatment-related late effects. Despite advances in radiation treatment, there is limited prospective multicentre evidence systematically describing radiotherapy late effects, functional recovery and survivorship outcomes in this population. The Australian Particle Therapy Clinical Quality Registry-ASPIRE (TROG 21.12), Australia's first radiation oncology-specific Clinical Quality Registry (CQR), was established to generate high-quality real-world evidence for patients receiving photon and proton radiation therapy for diagnosis codes as approved by Medicare Benefit Scheme (MBS) as eligible for proton therapy. MBS approved diagnosis include chordoma, base of skull chondrosarcoma, and some axial skeleton bone and soft tissue sarcomas (see table 1). Proton therapy is not yet available in Australia. Method(s): ASPIRE is recruiting participants across eight Australian centres and captures a nationally standardised minimum dataset from baseline through long-term follow-up. A resource efficient opt out consent model is used. Data collection includes patient demographics, tumour characteristics, treatment details, acute and late effects, disease outcomes, performance status and survivorship outcomes. The registry also records clinical quality indicators reflecting adherence to evidence-based care defined by the Cancer Australia Optimal Care Pathway for Sarcoma. Result(s): To date, 124 MBS eligible patients have been recruited to ASPIRE, these include twenty-two patients with sarcoma (18% of the cohort). Sarcoma participants include 13 paediatric patients (<=15yrs). The commonest histopathology in the sarcoma cohort is Ewings sarcoma for 12 patients, then rhabdomyosarcoma for 4, and there were two patients each with synovial sarcoma, osteosarcoma, and chondrosarcoma. The anatomical sites treated are head/neck for 5 patients, thorax in 7, abdomen/pelvis in 7, spine in 2 and extremity for one patient (see figure 1). ASPIRE has established a national prospective dataset capturing radiation therapy outcomes for patients with sarcoma and other rare cancers. To date, the registry has demonstrated high acceptability and the feasibility across participating centres. Conclusion(s): ASPIRE provides an innovative national platform for measuring and improving the quality of radiation oncology care for patients with sarcoma and other rare cancers. Longitudinal follow-up will enable evaluation of late effects, functional recovery, survivorship outcomes and comparative outcomes following photon and, in the future, proton radiation therapy.