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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

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-)occurrence o...

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Detalles Bibliográficos
Autores principales: Hebestreit, Helge, Zeidler, Cornelia, Schippers, Christopher, de Zwaan, Martina, Deckert, Jürgen, Heuschmann, Peter, Krauth, Christian, Bullinger, Monika, Berger, Alexandra, Berneburg, Mark, Brandstetter, Lilly, Deibele, Anna, Dieris-Hirche, Jan, Graessner, Holm, Gündel, Harald, Herpertz, Stephan, Heuft, Gereon, Lapstich, Anne-Marie, Lücke, Thomas, Maisch, Tim, Mundlos, Christine, Petermann-Meyer, Andrea, Müller, Susanne, Ott, Stephan, Pfister, Lisa, Quitmann, Julia, Romanos, Marcel, Rutsch, Frank, Schaubert, Kristina, Schubert, Katharina, Schulz, Jörg B., Schweiger, Susann, Tüscher, Oliver, Ungethüm, Kathrin, Wagner, Thomas O. F., Haas, Kirsten
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8842899/
https://www.ncbi.nlm.nih.gov/pubmed/35164804
http://dx.doi.org/10.1186/s13023-022-02176-1