Conceptualization and Implementation of the Central Information Portal on Rare Diseases: Protocol for a Qualitative Study
Conceptualization and Implementation of the Central Information Portal on Rare Diseases: Protocol for a Qualitative Study
Svenja Litzkendorf 1, MA; Tobias Hartz 2, Dipl -Math; Jens Göbel 3, BSc; Holger Storf 3, PhD; Frédéric Pauer 4, PhD; Ana Babac 1, MSc; Verena Lührs 4, MA; Leena Bruckner-Tuderman 5, PhD; Franziska Schauer 5, PhD; Jörg Schmidtke 6, PhD; Lisa Biehl 7, Dip Psych; TOF Wagner 8, PhD; J-Matthias Graf von der Schulenburg 1, PhD; Martin Frank 4, PhD 1 Center for Health Economics Research Hannover, Department of Insurance, Leibniz University of Hanover, Hannover ,
DE
2 Clinical Cancer Registry of Lower Saxony , Hannover ,
DE
3 Medical Informatics Group , University Hospital Frankfurt, Frankfurt ,
DE
4 Centre for Quality and Management in Healthcare , Medical Association of Lower Saxony, Hannover ,
DE
5 Department of Dermatology , Medical University Center of Freiburg, Freiburg ,
DE
6 Institute of Human Genetics, Orphanet Deutschland, Hannover Medical School, Hannover ,
DE
7 German Alliance of Chronic Rare Diseases , Berlin ,
DE
8 Frankfurt Center for Rare Diseases , University Hospital Frankfurt, Frankfurt ,
DE
Corresponding Author:
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Svenja Litzkendorf, MA
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Center for Health Economics Research Hannover
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Department of Insurance
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Leibniz University of Hanover
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7th floor
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Otto-Brenner-Straße 1
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Hannover
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DE
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Phone:
49 511 762 ext 14241
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Email: sl@cherh.de