ASPIRE

The Australian Particle Therapy Clinical Quality Registry (ASPIRE) is a prospective, observational, longitudinal study of paediatric, adolescent, young adult and rare adult tumour patients from a select group of tumour streams treated with radiation therapy. Comparing the long term toxicities of photon and proton radiation therapy.

The registry has set an initial accrual goal of 50 patients per year until the registry is collecting national data, then it is anticipated there will be 400 patients per year recruited with a total of 4,000 participants in 10 years.

There are no clinical interventions required for participants enrolled onto the registry. All enrolled participants will receive treatment, and follow-up care as pre-determined by their treating clinician, in accordance with the standard of care at the treating institution. All treatment interventions that participants receive will be recorded on the registry database from the patient medical record, including (but not necessarily limited to) surgery, immunotherapy and/or chemotherapy (systemic therapy), as part of the initial treatment regimen and any subsequent therapy. Follow up of outcomes, including disease response, treatment toxicities and any disease progression and or survival will be recorded from the patient medical record as that information becomes available. The Data Manager at each treating site will update the participant’s status in the REDCap database yearly from the available medical record and may also contact the referring or treating clinician directly to obtain follow-up results as required.

Participants will remain on the registry and will be followed until death, withdrawal of consent, or the registry is terminated.

Data collected is part of routine follow up care provided by the participants treating institution and collected from the medical record. There is no anticipated participant input.