Aim: To facilitate robust and long term clinical data collection to enable health services planning and clinical research for patients treated with the CyberKnife Robotic Radiosurgery System, the first of its kind in Australia.
Methods: Various options to capture data from all patients with malignant and benign tumours treated with the CyberKnife Robotic Radiosurgery System at the Radiation Oncology Department, Sir Charles Gairdner Hospital in Western Australia were explored. The RSSearch® Patient Registry, an international web-based secure database focused on advancing the science and clinical practice of radiosurgery was selected. Data was collected and entered over 4 contiguous phases, with either opt-in or opt-out consent and the completion of Patient Reported Outcome questionnaires for specific sub-groups.
Results: Between April 2014 and June 2018, 1039 Sir Charles Gairdner Hospital patients were enrolled in the RSSearch® Patient Registry. From 1039 patients enrolled, 1027 patients were treated with the CyberKnife. We treated 1082 different treatment locations. The majority of lesions were either malignant primary (37.9%) or metastatic (46.1%) with 7.6% benign and 8.4% recurrent lesions. The establishment of matrix organisational processes for data collection led to the development of improved workflow patterns and data collection pathways. Since March 2017, the Registry has been powered by the VisionTree Optimal Care® 360 platform and recently introduced the Patient Portal and FastTrack feature to collect electronic patient reported outcomes (ePROs). Our site is the first Registry site to pilot this new functionality.
Conclusions: The processes developed by a single centre to establish an efficient system for data collection and participation in an international registry may help inform other institutions considering clinical data collection options for new or novel treatments.