作者
Suja Somanadhan, Emma Nicholson, Emma Dorris, Aoife Brinkley, Avril Kennan, Eileen Treacy, Awan Atif, Sean Ennis, Vicky McGrath, Derick Mitchell, Grace O’Sullivan, Julie Power10, Anne Lawlor11, Paul Harkin, Sally Ann Lynch, Philip Watt13, Avril Daly14, Susie Donnelly, Thilo Kroll
发表日期
2020/11/11
简介
Background: The Rare Disease Research Partnership (RAinDRoP) was established in 2018 to bring together a wide variety of diverse voices in the rare disease community in Ireland and form a research partnership. This approach enabled clinicians, patients, carers and researchers to work together to identify top research priorities for rare diseases, which focused on a life-course perspective rather than a disease-specific need. Methods: A participatory multiple phase approach was used to identify research priorities for rare diseases. The research process involved three main phases: Phase I, Public Consultation Survey on Research in Rare Diseases in Ireland (PCSRRDI); Phase II, Research
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