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