Adopting Quality Criteria for Websites Providing Medical Information About Rare Diseases

Frédéric Pauer   ¹ , MSc ;   Jens Göbel   ² , BSc ;   Holger Storf   ² , PhD ;   Svenja Litzkendorf   ¹ , MA ;   Ana Babac   ¹ , MSc ;   Martin Frank   ³ , PhD ;   Verena Lührs   ³ , MA ;   Franziska Schauer   ⁴ , Dr med ;   Jörg Schmidtke   ⁵ , Dr med ;   Lisa Biehl   ⁶ ;   Thomas OF Wagner   ⁷ , Dr med ;   Frank Ückert   ⁸ , PhD ;   Johann-Matthias Graf von der Schulenburg   ¹ , PhD ;   Tobias Hartz   ³ , Dipl-Math

¹ Center for Health Economics Research Hannover (CHERH), Leibniz University Hannover, Hannover, Germany

² Medical Informatics Group (MIG), University Hospital Frankfurt, Frankfurt am Main, Germany

³ Centre for Quality and Management in Healthcare, Medical Association of Lower Saxony, Hannover, Germany

⁴ Department of Dermatology, Medical Center University of Freiburg, Freiburg im Breisgau, Germany

⁵ Orphanet Deutschland, Center for Rare Diseases, Hannover Medical School (MHH), Hannover, Germany

⁶ German Alliance of Chronic Rare Diseases (ACHSE) e.V, Berlin, Germany

⁷ Frankfurt Center for Rare Diseases (FRZSE), University Hospital Frankfurt, Frankfurt am Main, Germany

⁸ Department of Medical Informatics for Translational Oncology, German Cancer Research Center (DKFZ), Heidelberg, Germany