Development of a patient-reported outcomes registry for patients with brain tumours (BEACON)

Background Capturing patient-reported outcomes (PROs) is increasingly recognised as an essential component of high-quality, patient-centred care and research. Here, we describe the design and development of BEACON, a prospective, noninterventional registry aiming to capture the lived experience of adults after a brain tumour diagnosis, and report initial findings from our formative preimplementation evaluation. Patients and methods BEACON was codesigned with brain cancer patients and developed in collaboration with BioGrid Australia Limited. Four key design components were identified: (i) the ability to self-register and update consent; (ii) the use of validated, relevant PROs; (iii) incorporation of previously overlooked areas such as financial stress and informal supports; and (iv) real-time data analysis. Results Formative preimplementation evaluation was undertaken in June 2025 with detailed feedback obtained from 10 volunteers, including brain cancer patients, carers, and members of the public. Feedback explored access, usability, language, and overall satisfaction. Testing confirmed cross-device compatibility and demonstrated overall usability with high perceived value. Refinements prompted by the evaluation included clearer password definitions, a consolidated consent form, and adjusted colours for historic versus current responses to improve distinguishability. Conclusions Preliminary findings demonstrate favourable usability and satisfaction with the initial version of BEACON. BEACON is now available as a self-referral, population-accessible model, and links PROs with clinical data from the established Brain tumour Registry Australia INnovation and translation clinical data registry, providing a scalable infrastructure to support diverse research activities, including registry-based trials. Future research will focus on implementation and on leveraging BEACON to generate novel insights for multidimensional translational and clinical research.