改善欧洲镰状细胞疾病和其他血红蛋白病的筛查项目：患者组织的作用
Improving Screening Programmes for Sickle Cell Disorders and Other Haemoglobinopathies in Europe: The Role of Patient Organisations.
作者信息
James John, Dormandy Elizabeth
机构信息
Sickle Cell Society, London NW10 4UA, UK.
出版信息
Int J Neonatal Screen. 2019 Jan 29;5(1):12. doi: 10.3390/ijns5010012. eCollection 2019 Mar.
Abstract
This discussion paper has been written to show the unique contribution and added value that Patient Organisations can give to the development and improvement of newborn screening programmes for sickle cell disorder (SCD) and other haemoglobinopathies in Europe. As an example, the action of the Sickle Cell Society (SCS) in partnership with statutory organisations in the U.K., such as the National Health Service (NHS) Sickle Cell and Thalassaemia Screening Programme (NHS SCT SP), will be described.
摘要
撰写本讨论文件旨在展示患者组织对欧洲镰状细胞病（SCD）及其他血红蛋白病新生儿筛查项目的开发与改进所能做出的独特贡献及带来的附加价值。例如，将介绍镰状细胞病协会（SCS）与英国法定组织（如国民健康服务体系（NHS）镰状细胞与地中海贫血筛查项目（NHS SCT SP））合作开展的行动。
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Improving Screening Programmes for Sickle Cell Disorders and Other Haemoglobinopathies in Europe: The Role of Patient Organisations.改善欧洲镰状细胞疾病和其他血红蛋白病的筛查项目：患者组织的作用
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