Minimum data elements for the Australian Particle Therapy Clinical Quality Registry

Abstract

IntroductionConstruction of the first Australian particle therapy (PT) centre is underway. Establishment of a national registry, to be known as the Australian Particle Therapy Clinical Quality Registry (ASPIRE), has been identified as a mandatory requirement for PT treatment to be reimbursed by the Australian Medicare Benefits Schedule. This study aimed to determine a consensus set of Minimum Data Elements (MDEs) for ASPIRE.MethodsA modified Delphi and expert consensus process was completed. Stage 1 compiled currently operational English‐language international PT registries. Stage 2 listed the MDEs included in each of these four registries. Those included in three or four registries were automatically included as a potential MDE for ASPIRE. Stage 3 interrogated the remaining data items, and involved three rounds – an online survey to a panel of experts, followed by a live poll session of PT‐interested participants, and finally a virtual discussion forum of the original expert panel.ResultsOne hundred and twenty‐three different MDEs were identified across the four international registries. The multi‐staged Delphi and expert consensus process resulted in a total of 27 essential MDEs for ASPIRE; 14 patient factors, four tumour factors and nine treatment factors.ConclusionsThe MDEs provide the core mandatory data items for the national PT registry. Registry data collection for PT is paramount in the ongoing global effort to accumulate more robust clinical evidence regarding PT patient and tumour outcomes, quantifying the magnitude of clinical benefit and justifying the relatively higher costs of PT investment.

The rationale for a carbon ion radiation therapy facility in Australia

“…132 Initial work on minimum data elements has recently been published. 133 Registry-based studies can provide additional approaches to evidence generation for PT. 98,129,130,133,134 Costs and Cost Effectiveness?…”

“…133 Registry-based studies can provide additional approaches to evidence generation for PT. 98,129,130,133,134 Costs and Cost Effectiveness? Facility factors affecting costs PT facilities and operational costs are greater than for an XRT facility; and CIRT costs are greater than for an equivalent PBT facility.…”