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Browsing by Author "88de4c7a-402f-4875-93de-590d05a30690"

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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 ...
Comparison of different approaches applied in Analytic Hierarchy Process - An example of information needs of patients with rare diseases

Pauer, Frederic; Schmidt, Katharina; Babac, Ana; Damm, Kathrin; Frank, Martin; Schulenburg, Johann-Matthias Graf von der (London : BioMed Central Ltd., 2016)

Background: The Analytic Hierarchy Process (AHP) is increasingly used to measure patient priorities. Studies have shown that there are several different approaches to data acquisition and data aggregation. The aim of this ...
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 ...
Die Integration der Patientenperspektive im Bereich seltener Erkrankungen aus Sicht der Gesundheitsökonomie

Babac, Ana (Hannover : Institutionelles Repositorium der Leibniz Universität Hannover, 2020)

Bemühungen zur Integration der Patientenperspektive im Gesundheitswesen haben in Anbetracht des Spannungsfeldes zwischen medizinischer Kompetenzhoheit und der Rolle des Betroffenen als Koproduzent seiner Gesundheit eine ...
Measuring patients' priorities using the Analytic Hierarchy Process in comparison with Best-Worst-Scaling and rating cards: methodological aspects and ranking tasks

Schmidt, Katharina; Babac, Ana; Pauer, Frederic; Damm, Kathrin; Schulenburg, Johann-Matthias Graf von der (Heidelberg : Springer Open, 2016)

BACKGROUND: Identifying patient priorities and preference measurements have gained importance as patients claim a more active role in health care decision making. Due to the variety of existing methods, it is challenging ...
Patient-reported data informing early benefit assessment of rare diseases in Germany: A systematic review

Babac, Ana; Damm, Kathrin; Schulenburg, Johann-Matthias Graf von der (London : BioMed Central, 2019)

Background Since the implementation of the Regulation on Patient Integration (2003), the Act on the Reorganization of the Pharmaceutical Market (2011), and the Patient Rights Law (2013), the inclusion of patient ...
Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians

Babac, Ana; Litzkendorf, Svenja; Schmidt, Katharina; Damm, Kathrin; Frank, Martin; Schulenburg, Johann-Matthias Graf von der; Pauer, Frederic (College Park : American Physical Society, 2017)

Background: Despite diverging definitions on rare conditions, people suffering from rare diseases share similar difficulties. A lack of experience by health professionals, a long wait from first symptoms to diagnosis, ...
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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Browsing by Author "88de4c7a-402f-4875-93de-590d05a30690"

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