Epposi’s Rare Disease Interest Group Report
نویسنده
چکیده
.................................................................................................................................... 4 Objective ........................................................................................................................... 4 Methods ............................................................................................................................ 4 Results ............................................................................................................................... 4 Conclusion ......................................................................................................................... 5 Background ............................................................................................................................... 5 Method ..................................................................................................................................... 5 Results ...................................................................................................................................... 6 Including ethical implications in decision-making process at policy level ............................ 6 Involvement of patients and families in the decision making process at policy level ........... 7 Communication and information provision at the level of individual decision making ........ 7 Availability of treatment .................................................................................................. 11 Consequence of Screening and Quality of Life .................................................................. 13 Conclusion............................................................................................................................... 16 Literature ................................................................................................................................ 17 “Stakeholder perspectives on the organisation of systematic neonatal screening programmes in Europe: decision making and ethical implications” twitter.com/Epposi www.epposi.org linkedin.com/company/Epposi ©EPPOSI Page 4 of 21 Abstract
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