Conceptualization and implementation of the central information portal on rare diseases : protocol for a qualitative study

  • Background: Recently, public and political interest has focused on people living with rare diseases and their health concerns. Due to the large number of different types of rare diseases and the sizable number of patients, taking action to improve the life of those affected is gaining importance. In 2013, the federal government of Germany adopted a national action plan for rare diseases, including the call to establish a central information portal on rare diseases (Zentrales Informationsportal über seltene Erkrankungen, ZIPSE). Objective: The objective of this study, therefore, was to conduct scientific research on how such a portal must be designed to meet the needs of patients, their families, and medical professionals, and to provide high-quality information for information seekers. Methods: We chose a 3-step procedure to develop a needs-based prototype of a central information portal. In the first step, we determined the information needs of patients with rare diseases, their relatives, and health care professionals by means of qualitative interviews and their content-analytical evaluation. On the basis of this, we developed the basic structure of the portal. In the second step, we identified quality criteria for websites on rare diseases to ensure that the information linked with ZIPSE meets the quality demands. Therefore, we gathered existing criteria catalogs and discussed them in an expert workshop. In the third step, we implemented and tested the developed prototypical information portal. Results: A portal page was configured and made accessible on the Web. The structure of ZIPSE was based on the findings from 108 qualitative interviews with patients, their relatives, and health care professionals, through which numerous information needs were identified. We placed particularly important areas of information, such as symptoms, therapy, research, and advisory services, on the start page. Moreover, we defined 13 quality criteria, referring to factors such as author information, creation date, and privacy, enabling links with high-quality information. Moreover, 19 users tested all the developed routines based on usability and comprehensibility. Subsequently, we improved the visual presentation of search results and other important search functions. Conclusions: The implemented information portal, ZIPSE, provides high-quality information on rare diseases from a central point of access. By integrating the targeted groups as well as different experts on medical information during the construction, the website can assure an improved search for information for users. ZIPSE can also serve as a model for other Web-based information systems in the field of rare diseases. Registered Report Identifier: RR1-10.2196/7425.

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Author:Svenja Litzkendorf, Tobias Hartz, Jens GöbelORCiDGND, Holger StorfORCiDGND, Frédéric Pauer, Ana Babac, Verena Lührs, Leena Bruckner-Tuderman, Franziska Schauer, Jörg Schmidtke, Lisa Biehl, Thomas O. F. WagnerORCiDGND, Johann-Matthias von der Schulenburg, Martin Frank
Pubmed Id:
Parent Title (English):Journal of medical internet research. Research Protocols
Place of publication:Toronto
Contributor(s):Gunther Eysenbach
Document Type:Article
Year of Completion:2018
Date of first Publication:2018/05/11
Publishing Institution:Universitätsbibliothek Johann Christian Senckenberg
Release Date:2018/09/27
Tag:health information exchange; qualitative research; quality control; rare diseases
Issue:5, e112
Page Number:11
First Page:1
Last Page:11
Correction erschienen in: Journal of medical internet research. Research Protocols, 7.2018, Nr. 9, e11248, doi:10.2196/11248
©Svenja Litzkendorf, Tobias Hartz, Jens Göbel, Holger Storf, Frédéric Pauer, Ana Babac, Verena Lührs, Leena Bruckner-Tuderman, Franziska Schauer, Jörg Schmidtke, Lisa Biehl, TOF Wagner, J-Matthias Graf von der Schulenburg, Martin Frank. Originally published in JMIR Research Protocols (, 11.05.2018. This is an open-access article distributed under the terms of the Creative Commons Attribution License (, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on, as well as this copyright and license information must be included.
Institutes:Medizin / Medizin
Dewey Decimal Classification:6 Technik, Medizin, angewandte Wissenschaften / 61 Medizin und Gesundheit / 610 Medizin und Gesundheit
Licence (German):License LogoCreative Commons - Namensnennung 4.0