publicações selecionadas artigo académico Public and patient involvement in health data governance (DATAGov): protocol of a people-centred, mixed-methods study on data use and sharing for rare diseases care and research. BMJ Open. 2021 Public preferences for involvement in the governance of health data. Early Human Development. 2020 artigo de revista Benefits and Risks of Sharing Genomic Data for Research: Comparing the Views of Rare Disease Patients, Informal Carers and Healthcare Professionals. Healthcare. 2022