Dual guidance structure for evaluation of patients with unclear diagnosis in centers for rare diseases (ZSE-DUO): study protocol for a controlled multi-center cohort study

Abstract Background In individuals suffering from a rare disease the diagnostic process and the confirmation of a final diagnosis often extends over many years. Factors contributing to delayed diagnosis include health care professionals' limited knowledge of rare diseases and frequent (co-)occu...

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Bibliographic Details

Published in:	Orphanet Journal of Rare Diseases
Main Authors:	Helge Hebestreit, Cornelia Zeidler, Christopher Schippers, Martina de Zwaan, Jürgen Deckert, Peter Heuschmann, Christian Krauth, Monika Bullinger, Alexandra Berger, Mark Berneburg, Lilly Brandstetter, Anna Deibele, Jan Dieris-Hirche, Holm Graessner, Harald Gündel, Stephan Herpertz, Gereon Heuft, Anne-Marie Lapstich, Thomas Lücke, Tim Maisch, Christine Mundlos, Andrea Petermann-Meyer, Susanne Müller, Stephan Ott, Lisa Pfister, Julia Quitmann, Marcel Romanos, Frank Rutsch, Kristina Schaubert, Katharina Schubert, Jörg B. Schulz, Susann Schweiger, Oliver Tüscher, Kathrin Ungethüm, Thomas O. F. Wagner, Kirsten Haas, ZSE-DUO working group
Format:	Article
Language:	English
Published:	BMC 2022-02-01
Subjects:	Rare diseases Undetermined symptoms Unclear diagnosis Mental health disorders Cohort study
Online Access:	https://doi.org/10.1186/s13023-022-02176-1