The number of children needing continuous access to life-sustaining medical devices is on the rise. Technological advancements in critical care have led to increasingly complex clinical, bioethical and legal concerns, with clinicians sometimes left asking Just because we can, should we? (opens in a new window)TechChild, a five-year programme of research funded by the European Research Council, aims to provide a new way of thinking about the factors that influence the initiation of life-sustaining clinical technology. It examines the influences on the initiation of technology dependence in the context of contrasting health, legal and socio-political systems.
The Rare Disease Research Partnership (RAinDRoP) was established in 2018 as a collaborative research partnership consisting of basic scientists, applied researchers, health and social care professionals, patients, advocacy and support organisations and families affected by rare diseases. The aim of the RAinDRoP initiative was two-fold. First, RAinDRoP was established as a collaborative research partnership and evolving network in response to the National Rare Disease Plan for Ireland to ensure relevant, focused and coherent research informed by the needs and experiences of people living with rare diseases. Second, to identify rare disease research priorities across the lifespan in the context of Ireland from multiple stakeholder perspectives. This study received an exemption from full ethical review by the Office of Research Ethics at UCD. The Ethics Exemption Reference Number (REERN): LS-E-19-32-Somanadhan.