Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals

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作者：
Holly Walton
Pei Li Ng
Amy Simpson
Lara Bloom
Lyn S. Chitty
Naomi J. Fulop
Amy Hunter
Jennifer Jones
Joe Kai
Larissa Kerecuk
Maria Kokocinska
Kerry Leeson-Beevers
Sharon Parkes
Angus I. G. Ramsay
Alastair Sutcliffe
Christine Taylor
Stephen Morris
机构：
[1] University College London,Department of Applied Health Research
[2] Genetic Alliance UK,North Thames Genomic Laboratory Hub
[3] Creative Works,Division of Primary Care, Centre for Academic Primary Care
[4] The Ehlers-Danlos Society and Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration (Penn State College of Medicine),Primary Care Unit, Department of Public Health and Primary Care
[5] Great Ormond Street NHS Foundation Trust,undefined
[6] UCL Great Ormond Street Institute of Child Health,undefined
[7] NIHR School for Primary Care Research,undefined
[8] University of Nottingham,undefined
[9] Birmingham Women’s and Children’s NHS Foundation Trust,undefined
[10] NIHR Clinical Research Network West Midlands,undefined
[11] Alstrom Syndrome UK,undefined
[12] UCL and Great Ormond Street Institute of Child Health,undefined
[13] University of Cambridge,undefined
来源：
Orphanet Journal of Rare Diseases | / 18卷
关键词：
Rare conditions; Rare diseases; Care coordination; Survey; Care plan; Care coordinator; Specialist centre;
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