Published on in Vol 7 , No 5 (2018) :May

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/7425, first published .
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

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:

  • Svenja Litzkendorf, MA
  • Center for Health Economics Research Hannover
  • Department of Insurance
  • Leibniz University of Hanover
  • 7th floor
  • Otto-Brenner-Straße 1
  • Hannover
  • DE
  • Phone: 49 511 762 ext 14241
  • Email: sl@cherh.de