title: Vision and challenges of a cartographic representation of expert medical centres for rare diseases.
abstract: In Germany, many highly specialized facilities for the diagnosis and treatment of rare diseases exist. However it is quite difficult for patients to find the required specialists because of the fact that information on the internet is scattered and of variable quality. The German Federal Ministry of Health initiated several activities to address this issue. This paper describes the project se-atlas which aims at presenting the medical care options for people with rare diseases on an interactive map and in a list format. Potential users of this resource will be patients and their relatives, doctors, non-medical personnel and the general public. Most information derived from the data sets is already listed in ORPHANET. The project's primary goals are to steadily increase the data set and to ensure its quality. This paper presents the goals and measures taken in this project. It gives an overview of the challenges implementing such a new service and the visions behind.
authors.affiliation: Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), Mainz University Medical Center, Obere Zahlbacher Str. 69, 55131 Mainz, Germany.
authors.forename: Holger
authors.initials: H
authors.lastname: Storf
authors.affiliation: Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), Mainz University Medical Center, Obere Zahlbacher Str. 69, 55131 Mainz, Germany.
authors.forename: Tobias
authors.initials: T
authors.lastname: Hartz
authors.affiliation: Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), Mainz University Medical Center, Obere Zahlbacher Str. 69, 55131 Mainz, Germany.
authors.forename: Niels
authors.initials: N
authors.lastname: Tegtbauer
authors.affiliation: Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), Mainz University Medical Center, Obere Zahlbacher Str. 69, 55131 Mainz, Germany.
authors.forename: Wulf
authors.initials: W
authors.lastname: Pfeiffer
authors.affiliation: Institute of Human Genetics, Hannover Medical School (MHH) Carl-Neuberg-Str. 1, 30625 Hannover, Germany.
authors.forename: Joerg
authors.initials: J
authors.lastname: Schmidtke
authors.affiliation: Zentrum für Seltene Erkrankungen Tübingen, Institute for Medical Genetics and Applied Genomics, University of Tübingen, Calwerstr. 7, 72076 Tübingen, Germany.
authors.forename: Holm
authors.initials: H
authors.lastname: Graessner
authors.affiliation: Frankfurter Referenzzentrum für Seltene Erkrankungen (FRZSE), Frankfurt University Hospital, Theodor-Stern-Kai 7, 60590 Frankfurt, Germany.
authors.forename: Thomas
authors.initials: T
authors.lastname: Wagner
authors.affiliation: Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), Mainz University Medical Center, Obere Zahlbacher Str. 69, 55131 Mainz, Germany.
authors.forename: Frank
authors.initials: F
authors.lastname: Uckert
mesh_terms: D054626:Consumer Health Information / Q000379:methods*; D062305:Geographic Mapping; D005858:Germany; D006297:Health Services Accessibility / Q000458:organization & administration*; D006761:Hospitals / Q000145:classification*; D006801:Humans; D033181:Information Dissemination / Q000379:methods; D010353:Patient Education as Topic / Q000379:methods; D010358:Patient Participation / Q000379:methods; D035583:Rare Diseases / Q000175:diagnosis* / Q000628:therapy*; D061108:Social Media