Central Information Portal for Rare Diseases (ZIPSE)
The major goal of the research project is the conceptualization of a Central Information Portal for Rare Diseases (ZIPSE), offering quality-assured information for both, patients and their relatives as well as medical, therapeutic and custodial service providers. In this regard, available information concerning rare diseases, in particular diagnostics, therapy, self-help, care facilities, research and registries shall be collected. Furthermore, opportunities for self-information in respect to social and benefit law will be given. The portal itself will not contain primary information, but will refer to existing quality-assured sources of information. Information needs of each target group will be determined using qualitative research methods. These considerations will be included for information to be easier accessed and retrieved through quality-assured primary sources. Through the application of an intelligent user guidance system a target-group-specific access of relevant and appropriate information is ensured. Besides, a comprehensive evaluation of costs and benefits of an additional information telephone line will be conducted as well as other low-barrier alternatives considered.
Ensuring the future operation of the information portal -and eventually also of the information telephone service- a sustainability and financial concept for the operational part after the federally funded phase of conceptualization shall be developed. For further information please visit the ZIPSE internet portal at: www.portal-se.de.
Supported by the Federal Ministry of Health (BMG) following a resolution of the German Bundestag
Contact: Svenja Litzkendorf