title: [On the fast track to diagnosis : Recommendations for patients without a diagnosis].
abstract: BACKGROUND
  Patients, who have spent many years without a proper diagnosis present an extraordinary problem to health care providers and to the healthcare system as a whole. A long 'diagnostic journey' increases the risk of disease chronification, as well as the number of therapy attempts, which could lead to iatrogenic impairment. New resources and specialized health care departments are being developed to help and support this patient group. One example of such department is the Interdisciplinary Competence Unit for Patients without a Diagnosis at the center for rare diseases in Bonn (ZSEB), Germany.
  
  
  OBJECTIVE
  To shed light on the current health care management of patients without a diagnosis and to present an established directive to optimize the care for this patient group, as practiced at the InterPoD.
  
  
  METHODS
  Showcase of directives and advice for the health care management of long-term patients without a diagnosis.
  
  
  RESULTS
  Sociodemographic and clinical characteristics based on the treated patient collective at the InterPoD along with their directives, from the years 2014 to 2016.
  
  
  CONCLUSIONS
  The descriptive statistics and the increasing number of treated patients are a first indication of the usefulness of InterPoD-related processes.
authors.affiliation: Zentrum für seltene Erkrankungen Bonn (ZSEB), Universitätsklinikum Bonn, Biomedizinisches Zentrum (BMZ), Sigmund-Freud-Straße 25, 53127, Bonn, Deutschland. cstieber@uni-bonn.de.|Institut für Humangenetik, Universitätsklinikum Bonn, Bonn, Deutschland. cstieber@uni-bonn.de.
authors.forename: Christiane
authors.initials: C
authors.lastname: Stieber
authors.affiliation: Zentrum für seltene Erkrankungen Bonn (ZSEB), Universitätsklinikum Bonn, Biomedizinisches Zentrum (BMZ), Sigmund-Freud-Straße 25, 53127, Bonn, Deutschland. muecke@uni-bonn.de.|Institut für Hausarztmedizin, Universität Bonn, Bonn, Deutschland. muecke@uni-bonn.de.|Klinik für Palliativmedizin, Universitätsklinikum Bonn, Bonn, Deutschland. muecke@uni-bonn.de.
authors.forename: Martin
authors.initials: M
authors.lastname: Mücke
authors.affiliation: Zentrum für seltene Erkrankungen Bonn (ZSEB), Universitätsklinikum Bonn, Biomedizinisches Zentrum (BMZ), Sigmund-Freud-Straße 25, 53127, Bonn, Deutschland.
authors.forename: Isabelle C
authors.initials: IC
authors.lastname: Windheuser
authors.affiliation: Pädiatrische Hämatologie und Onkologie, Medizinische Hochschule Hannover, Hannover, Deutschland.
authors.forename: Lorenz
authors.initials: L
authors.lastname: Grigull
authors.affiliation: Helmholtz-Zentrum für Infektionsforschung, Braunschweig, Deutschland.|Ostwestfalia-Hochschule, Wolfenbüttel, Deutschland.
authors.forename: Frank
authors.initials: F
authors.lastname: Klawonn
authors.affiliation: Zentrum für Seltene Erkrankungen Lübeck, Universitätsklinikum Schleswig-Holstein, Lübeck, Deutschland.
authors.forename: Sinem
authors.initials: S
authors.lastname: Tunc
authors.affiliation: Zentrum für Seltene Erkrankungen Lübeck, Universitätsklinikum Schleswig-Holstein, Lübeck, Deutschland.
authors.forename: Alexander
authors.initials: A
authors.lastname: Münchau
authors.affiliation: Zentrum für seltene Erkrankungen Bonn (ZSEB), Universitätsklinikum Bonn, Biomedizinisches Zentrum (BMZ), Sigmund-Freud-Straße 25, 53127, Bonn, Deutschland.|Klinik für Neurologie, Universitätsklinikum Bonn, Bonn, Deutschland.|Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE), Bonn, Deutschland.
authors.forename: Thomas
authors.initials: T
authors.lastname: Klockgether
mesh_terms: D020000:Decision Support Systems, Clinical / Q000592:standards*; D003933:Diagnosis; D003937:Diagnosis, Differential; D003951:Diagnostic Errors / Q000517:prevention & control*; D005858:Germany; D006801:Humans; D017410:Practice Guidelines as Topic; D035583:Rare Diseases / Q000145:classification / Q000175:diagnosis*; D063189:Symptom Assessment / Q000592:standards*
keywords: Center for rare diseases; InterPoD; Patients without a diagnosis; Rare diseases; Rare illnesses