Conceptualization and Implementation of the Central Information Portal on Rare Diseases: Protocol for a Qualitative Study-Reference-Cited by-同舟云学术

Conceptualization and Implementation of the Central Information Portal on Rare Diseases: Protocol for a Qualitative Study

Published:2018-05-11 Issue:5 Volume:7 Page:e112
ISSN:1929-0748
Container-title:JMIR Research Protocols
language:en
Short-container-title:JMIR Res Protoc

Author:

Litzkendorf Svenja^ORCID,Hartz Tobias^ORCID,Göbel Jens^ORCID,Storf Holger^ORCID,Pauer Frédéric^ORCID,Babac Ana^ORCID,Lührs Verena^ORCID,Bruckner-Tuderman Leena^ORCID,Schauer Franziska^ORCID,Schmidtke Jörg^ORCID,Biehl Lisa^ORCID,Wagner TOF^ORCID,Graf von der Schulenburg J-Matthias^ORCID,Frank Martin^ORCID

Publisher

JMIR Publications Inc.

Subject

General Medicine

Reference21 articles.

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2. Council of the European Union199912162016-11-07Regulation (EC) No 141/2000 of the European Parliament and of the Council https://ec.europa.eu/health/sites/health/files/files/eudralex/vol-1/reg_2000_141_cons-2009-07/reg_2000_141_cons-2009-07_en.pdf

3. EidtDFrankMReimannAWagnerTOMittendorfTGraf von der SchulenburgJM200906092016-11-07Maßnahmen zur Verbesserung der gesundheitlichen Situation von Menschen mit seltenen Erkrankungen in Deutschland http://www.bundesgesundheitsministerium.de/404

4. Geschäftsstelle des Nationalen Aktionsbündnisses für Menschen mit Seltenen Erkrankungen [Office of the National Action Alliance for People with Rare Diseases]201308282017-09-10National Plan of Action for People with Rare Diseases http://www.namse.de/images/stories/Dokumente/Aktionsplan/national%20plan%20of%20action.pdf

5. Orpha2017-10-23The portal for rare diseases and orphan drugs http://www.orpha.net/consor/cgi-bin/index.php?lng=EN

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1. Integrating patient perspectives in medical decision-making: a qualitative interview study examining potentials within the rare disease information exchange process in practice;BMC Medical Informatics and Decision Making;2019-09-18

2. Metadata Correction: Conceptualization and Implementation of the Central Information Portal on Rare Diseases: Protocol for a Qualitative Study;JMIR Research Protocols;2018-09-19