publicações selecionadas
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artigo académico
- Parent-centred communication in Neonatal Intensive Care Units: needs and sources of information. Annals of Pediatrics. 2023
- Quality of life of mothers and fathers 4 to 6 months after birth: the effect of a very preterm delivery. Maternal and Child Health Journal. 2023
- 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
- Public participation in health data governance: a scoping review. Early Human Development. 2019
- A Short Form of the Neonatal Intensive Care Unit Family Needs Inventory. Jornal de Pediatria. 2016
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capítulo de livro
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documento