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