Jens Göbel

TL;DR: Overall, the quality of information on the Internet about rare diseases is low and some information categories are underrepresented (eg, information about psychosocial counseling, social-legal advice, and family planning).

TL;DR: To define usefulquality criteria for websites about rare diseases, which are an essential source of information for many patients, a trade-off is necessary between the high standard of quality criteria for health information websites in general and the limited provision of information about some rare diseases.

TL;DR: With OSSE, the foundation is laid to operate linked patient registries while respecting strong data protection regulations and the feedback given by the users will influence further development of OSSE.

TL;DR: Meager amounts of data stored locally, a small number of experts, and a broad spectrum of technological solutions incompatible with each other characterize the landscape of registries for rare diseases in Germany.

TL;DR: The Goethe-Universitat Frankfurt am Main Fachbereich 16 Medicine and the Johann Wolfgang Goethe University Frankfurt Faculty 16 Medicine are searching for new ways to improve the quality of care for patients with complex medical conditions.