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TY  - ELEC
LB  - 1.
AU  - Shojania, KG
AU  - McDonald, KM
AU  - Wachter, RM
AU  - Owens, DK
TI  - Technical Review 9. Closing the Quality Gap: A Critical Analysis of Quality Improvement Strategies. Volume 7 – Care Coordination
PY  - 2007
UR  - www.ahrq.gov/downloads/pub/evidence/pdf/caregap/caregap.pdf
M1  - 22 October 2021
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TY  - JOUR
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AU  - Nguengang Wakap, S
AU  - Lambert, DM
AU  - Olry, A
AU  - Rodwell, C
AU  - Gueydan, C
AU  - Lanneau, V
TI  - Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database
J2  - Eur J Hum Genet
PY  - 2020
VL  - 28
SP  - 165
EP  - 173
UR  - https://doi.org/10.1038/s41431-019-0508-0
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TY  - ELEC
LB  - 3.
AU  - European Commission
TI  - EU Research on Rare Diseases
UR  - https://ec.europa.eu/info/research-and-innovation/research-area/health-research-and-innovation/rare-diseases_en
M1  - 17 January 2021
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TY  - ELEC
LB  - 4.
AU  - Rare Disease, UK
TI  - What is a Rare Disease?
UR  - www.raredisease.org.uk/what-is-a-rare-disease/
M1  - 17 January 2021
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TY  - ELEC
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AU  - Rare Disease, UK
TI  - The Rare Reality – An Insight into the Patient and Family Experience of Rare Disease
PY  - 2016
UR  - www.raredisease.org.uk/media/2361/patient-experiences-2015.pdf
M1  - 22 October 2021
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TY  - ELEC
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AU  - Genetic Alliance, UK
TI  - The Hidden Costs of Rare Diseases: A Feasibility Study
PY  - 2016
UR  - www.geneticalliance.org.uk/media/2502/hidden-costs-full-report_21916-v2-1.pdf
M1  - 22 October 2021
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TY  - ELEC
LB  - 7.
AU  - Department of Health and Social Care
TI  - The UK Strategy for Rare Diseases
UR  - www.gov.uk/government/uploads/system/uploads/attachment_data/file/260562/UK_Strategy_for_Rare_Diseases.pdf
M1  - 22 October 2021
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TY  - ELEC
LB  - 8.
AU  - The All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions
TI  - Leaving No One Behind: Why England Needs an Implementation Plan for the UK Strategy for Rare Diseases
PY  - 2017
UR  - www.raredisease.org.uk/media/2757/final-for-website.pdf
M1  - 22 October 2021
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TY  - ELEC
LB  - 9.
AU  - Department of Health and Social Care
TI  - The UK Rare Disease Framework
UR  - www.gov.uk/government/publications/uk-rare-diseases-framework/the-uk-rare-diseases-framework
M1  - 17 January 2021
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TY  - ELEC
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AU  - Rare Disease, UK
TI  - Rare Disease Care Coordination: Delivering Value, Improving Services
PY  - 2013
UR  - www.raredisease.org.uk/media/1639/rduk-care-coordinator-report.pdf
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AU  - Van Groenendael, S
AU  - Giacovazzi, L
AU  - Davison, F
AU  - Holtkemper, O
AU  - Huang, Z
AU  - Wang, Q
TI  - High quality, patient centred and coordinated care for Alstrom syndrome: a model of care for an ultra-rare disease
J2  - Orphanet J Rare Dis
PY  - 2015
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UR  - https://doi.org/10.1186/s13023-015-0366-y
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AU  - Arksey, H
AU  - O’Malley, L
TI  - Scoping studies: towards a methodological framework
J2  - Int J Soc Res Methodol
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AU  - Gerard, K
TI  - Practical Issues in Conducting a Discrete Choice Experiment
A2  - Ryan, M
A2  - Gerard, K
A2  - Amaya-Amaya, M
T2  - Using Discrete Choice Experiments to Value Health and Healthcare
CY  - Dordrecht
PB  - Springer
PY  - 2008
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UR  - https://doi.org/10.1007/978-1-4020-5753-3_3
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TI  - Discrete Choice Experiment (DCE)
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AU  - Walton, H
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TI  - Defining coordinated care for people with rare conditions: a scoping review
J2  - Int J Integr Care
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TI  - Medicare Coordinated Care
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T2  - Comprehensive Care Coordination for Chronically Ill Adults
CY  - Chichester
PB  - Wiley-Blackwell
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AU  - Larsen, K
TI  - Coordination of Care Within Primary Health Care and With Other Sectors: A Systematic Review
PY  - 2006
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M1  - 25 October 2021
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AU  - EURORDIS
TI  - Juggling Care and Daily Life: The Balancing Act of the Rare Disease Community
PY  - 2017
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AU  - NHS England
TI  - Implementation Plan for the UK Strategy for Rare Diseases
PY  - 2018
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AU  - Rare Disease, UK
TI  - Understanding Children and Young People’s Experiences
PY  - 2018
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AU  - Morando, V
AU  - Tozzi, V
TI  - The transition of patients with rare diseases between providers: the patient journey from the patient perspective
J2  - Int J Integr Care
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TI  - Integrated multidisciplinary care for the management of chronic conditions in adults: an overview of reviews and an example of using indirect evidence to inform clinical practice recommendations in the field of rare diseases
J2  - Haemophilia
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J2  - Eff Clin Pract
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TI  - Review of 11 national policies for rare diseases in the context of key patient needs
J2  - Orphanet J Rare Dis
PY  - 2017
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UR  - https://doi.org/10.1186/s13023-017-0618-0
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TI  - Selecting Studies and Collecting Data
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T2  - Cochrane Handbook for Systematic Reviews of Interventions: Cochrane Book Series
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TI  - Scoping studies: advancing the methodology
J2  - Implement Sci
PY  - 2010
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TI  - PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation
J2  - Ann Intern Med
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TI  - Guidance on the Conduct of Narrative Synthesis in Systematic Reviews. A Product from the ESRC Methods Programme
PY  - 2006
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AU  - McDonald, KM
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AU  - Bravata, DM
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TI  - Closing the Quality Gap: A Critical Analysis of Quality Improvement Strategies (Vol. 7: Care Coordination)
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PB  - Agency for Healthcare Research and Quality
PY  - 2007
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TI  - Algorithms and collaborative-care systems for depression: are they effective and why? A systematic review
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