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Browsing Wirtschaftswissenschaftliche Fakultät by Author "b363241f-8d5f-46aa-9918-2f7de80e4438"

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Adopting Quality Criteria for Websites Providing Medical Information About Rare Diseases

Pauer, Frederic; Gobel, Jens; Storf, Holger; Litzkendorf, Svenja; Babac, Ana; Frank, Martin; Luhrs, Verena; Schauer, Franziska; Schmidtke, Jorg; Biehl, Lisa; Wagner, Thomas O.F.; Uckert, Frank; Schulenburg, Johann-Matthias Graf von der; Hartz, Tobias (Toronto : JMIR Publications, 2016)

BACKGROUND: The European Union considers diseases to be rare when they affect less than 5 in 10,000 people. It is estimated that there are between 5000 and 8000 different rare diseases. Consistent with this diversity, the ...
Conceptualization and implementation of the central information portal on rare diseases: Protocol for a qualitative study

Litzkendorf, Svenja; Hartz, Tobias; Göbel, Jens; Storf, Holger; Pauer, Frédéric; Babac, Ana; Lührs, Verena; Bruckner-Tuderman, Leena; Schauer, Franziska; Schmidtke, Jörg; Biehl, Lisa; Wagner, Thomas O.F.; Schulenburg, Johann-Matthias Graf von der; Frank, Martin (Toronto : JMIR Publications, 2018)

Background: Recently, public and political interest has focused on people living with rare diseases and their health concerns. Due to the large number of different types of rare diseases and the sizable number of patients, ...
Integrating patient perspectives in medical decision-making: a qualitative interview study examining potentials within the rare disease information exchange process in practice

Babac, Ana; von Friedrichs, Verena; Litzkendorf, Svenja; Zeidler, Jan; Damm, Kathrin; Schulenburg, Johann-Matthias Graf von der (London : BioMed Central, 2019)

Background Many European countries have recently implemented national rare disease plans. Although the network is strengthening, especially on the macro and meso levels, patients still go a long way through healthcare ...
Rare diseases on the internet: An assessment of the quality of online information

Pauer, Fréderic; Litzkendorf, Svenja; Göbel, Jens; Storf, Holger; Zeidler, Jan; Schulenburg, Johann-Matthias Graf von der (Journal of Medical Internet Research, 2017)

Background: The importance of the Internet as a medium for publishing and sharing health and medical information has increased considerably during the last decade. Nonetheless, comprehensive knowledge and information are ...
Telephone health services in the field of rare diseases: A qualitative interview study examining the needs of patients, relatives, and health care professionals in Germany

Babac, Ana; Frank, Martin; Pauer, Frederic; Litzkendorf, Svenja; Rosenfeldt, Daniel; Lührs, Verena; Biehl, Lisa; Hartz, Tobias; Storf, Holger; Schauer, Franziska; Wagner, Thomas O.F.; Schulenburg, Johann-Matthias Graf von der (London : BioMed Central Ltd., 2018)

Background: Rare diseases are, by definition, very serious and chronic diseases with a high negative impact on quality of life. Approximately 350 million people worldwide live with rare diseases. The resulting high disease ...

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Browsing Wirtschaftswissenschaftliche Fakultät by Author "b363241f-8d5f-46aa-9918-2f7de80e4438"

Browsing Wirtschaftswissenschaftliche Fakultät by Author "b363241f-8d5f-46aa-9918-2f7de80e4438"

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