publicações selecionadas
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artigo académico
- Benefits and risks of sharing genomic data for research: comparing the views of rare disease patients, informal carers and healthcare professionals. International Journal of Environmental Research and Public Health. 2022
- 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