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Position statement on access to care in rare liver diseases: advancements of the European reference network (ERN) RARE-LIVER

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Position statement on access to care in rare liver diseases: advancements of the European reference network (ERN) RARE-LIVER. / Bernts, Lucas H P; Jones, David E J; Kaatee, Marleen M; Lohse, Ansgar W; Schramm, Christoph; Sturm, Ekkehard; Drenth, Joost P H.

in: ORPHANET J RARE DIS, Jahrgang 14, Nr. 1, 08.07.2019, S. 169.

Publikationen: SCORING: Beitrag in Fachzeitschrift/Zeitung › SCORING: Zeitschriftenaufsatz › Forschung › Begutachtung

Harvard

Bernts, LHP, Jones, DEJ, Kaatee, MM, Lohse, AW, Schramm, C, Sturm, E & Drenth, JPH 2019, 'Position statement on access to care in rare liver diseases: advancements of the European reference network (ERN) RARE-LIVER', ORPHANET J RARE DIS, Jg. 14, Nr. 1, S. 169. https://doi.org/10.1186/s13023-019-1152-z

APA

Bernts, L. H. P., Jones, D. E. J., Kaatee, M. M., Lohse, A. W., Schramm, C., Sturm, E., & Drenth, J. P. H. (2019). Position statement on access to care in rare liver diseases: advancements of the European reference network (ERN) RARE-LIVER. ORPHANET J RARE DIS, 14(1), 169. https://doi.org/10.1186/s13023-019-1152-z

Vancouver

Bernts LHP, Jones DEJ, Kaatee MM, Lohse AW, Schramm C, Sturm E et al. Position statement on access to care in rare liver diseases: advancements of the European reference network (ERN) RARE-LIVER. ORPHANET J RARE DIS. 2019 Jul 8;14(1):169. https://doi.org/10.1186/s13023-019-1152-z

Bibtex

@article{6fae6d90fcd546c3afa8fa7dd6cbd287,
title = "Position statement on access to care in rare liver diseases: advancements of the European reference network (ERN) RARE-LIVER",
abstract = "The European Reference Network for rare liver diseases (ERN RARE-LIVER) is a Europe-wide network of paediatric and adult hepatologists from expert centres in close collaboration with patient advocates from the various disease-areas covered in our ERN. The ERN is focused on providing more equitable care across Europe and creates a network of both medical specialists and patient experts in rare liver disease. This position paper summarizes the achievements of the first year and plots the route for the near future for ERN RARE-LIVER, as discussed during a strategy meeting that took place 27 and 28 February 2018 in Nijmegen, the Netherlands. ERN RARE-LIVER has established itself as a group with experts, hospitals and patients. One of the tools to improve communication is the clinical patient management system (CPMS) that allows access to expert consultation by European physicians confronted with a patient with rare liver disease. ERN RARE-LIVER will function as the platform to improve healthcare by initiating registries, foster research efforts and coordinate development of clinical guidelines in Europe.",
author = "Bernts, {Lucas H P} and Jones, {David E J} and Kaatee, {Marleen M} and Lohse, {Ansgar W} and Christoph Schramm and Ekkehard Sturm and Drenth, {Joost P H}",
year = "2019",
month = jul,
day = "8",
doi = "10.1186/s13023-019-1152-z",
language = "English",
volume = "14",
pages = "169",
journal = "ORPHANET J RARE DIS",
issn = "1750-1172",
publisher = "BioMed Central Ltd.",
number = "1",

}

RIS

TY - JOUR

T1 - Position statement on access to care in rare liver diseases: advancements of the European reference network (ERN) RARE-LIVER

AU - Bernts, Lucas H P

AU - Jones, David E J

AU - Kaatee, Marleen M

AU - Lohse, Ansgar W

AU - Schramm, Christoph

AU - Sturm, Ekkehard

AU - Drenth, Joost P H

PY - 2019/7/8

Y1 - 2019/7/8

N2 - The European Reference Network for rare liver diseases (ERN RARE-LIVER) is a Europe-wide network of paediatric and adult hepatologists from expert centres in close collaboration with patient advocates from the various disease-areas covered in our ERN. The ERN is focused on providing more equitable care across Europe and creates a network of both medical specialists and patient experts in rare liver disease. This position paper summarizes the achievements of the first year and plots the route for the near future for ERN RARE-LIVER, as discussed during a strategy meeting that took place 27 and 28 February 2018 in Nijmegen, the Netherlands. ERN RARE-LIVER has established itself as a group with experts, hospitals and patients. One of the tools to improve communication is the clinical patient management system (CPMS) that allows access to expert consultation by European physicians confronted with a patient with rare liver disease. ERN RARE-LIVER will function as the platform to improve healthcare by initiating registries, foster research efforts and coordinate development of clinical guidelines in Europe.

AB - The European Reference Network for rare liver diseases (ERN RARE-LIVER) is a Europe-wide network of paediatric and adult hepatologists from expert centres in close collaboration with patient advocates from the various disease-areas covered in our ERN. The ERN is focused on providing more equitable care across Europe and creates a network of both medical specialists and patient experts in rare liver disease. This position paper summarizes the achievements of the first year and plots the route for the near future for ERN RARE-LIVER, as discussed during a strategy meeting that took place 27 and 28 February 2018 in Nijmegen, the Netherlands. ERN RARE-LIVER has established itself as a group with experts, hospitals and patients. One of the tools to improve communication is the clinical patient management system (CPMS) that allows access to expert consultation by European physicians confronted with a patient with rare liver disease. ERN RARE-LIVER will function as the platform to improve healthcare by initiating registries, foster research efforts and coordinate development of clinical guidelines in Europe.

U2 - 10.1186/s13023-019-1152-z

DO - 10.1186/s13023-019-1152-z

M3 - SCORING: Journal article

C2 - 31287000

VL - 14

SP - 169

JO - ORPHANET J RARE DIS

JF - ORPHANET J RARE DIS

SN - 1750-1172

IS - 1

ER -