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Auflistung nach Schlagwort "Rare diseases"

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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, ...
Evaluation of two family-based intervention programs for children affected by rare disease and their families – research network (CARE-FAM-NET): study protocol for a rater-blinded, randomized, controlled, multicenter trial in a 2x2 factorial design

Boettcher, Johannes; Filter, Bonnie; Denecke, Jonas; Hot, Amra; Daubmann, Anne; Zapf, Antonia; Wegscheider, Karl; Zeidler, Jan; Schulenburg, J.-Matthias Graf von der; Bullinger, Monika; Rassenhofer, Miriam; Schulte-Markwort, Michael; Wiegand-Grefe, Silke (London : BioMed Central, 2020)

Background: Families of children with rare diseases (i.e., not more than 5 out of 10,000 people are affected) are often highly burdened with fears, insecurities and concerns regarding the affected child and its siblings. ...
Gesundheitsökonomische Aspekte bei der Versorgung von Menschen mit seltenen Erkrankungen

Pauer, Frédéric (Hannover : Gottfried Wilhelm Leibniz Universität Hannover, 2017)

[no abstract]
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 ...
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 ...
Use and importance of different information sources among patients with rare diseases and their relatives over time: a qualitative study

Litzkendorf, Svenja; Frank, Martin; Babac, Ana; Rosenfeldt, Daniel; Schauer, Franziska; Hartz, Tobias; Schulenburg, Johann-Matthias Graf von der (London : BioMed Central, 2020)

Background: Finding reliable information on one of more than 7000 rare diseases is a major challenge for those affected. Since rare diseases are defined only by the prevalence criterion, a multitude of heterogeneous ...

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Auflistung nach Schlagwort "Rare diseases"

Auflistung nach Schlagwort "Rare diseases"

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