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Dual guidance structure for evaluation of patients with unclear diagnosis in centers for rare diseas...

Dual guidance structure for evaluation of patients with unclear diagnosis in centers for rare diseas...

https://devfeature-collection.sl.nsw.gov.au/record/TN_cdi_gale_infotracmisc_A699458466

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

About this item

Full title

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

Author / Creator

Hebestreit, Helge , Zeidler, Cornelia , Bullinger, Monika , Berger, Alexandra , Berneburg, Mark , Brandstetter, Lilly , Deibele, Anna , Graessner, Holm , Gündel, Harald , Heuft, Gereon , Lapstich, Anne-Marie , Lücke, Thomas , Mundlos, Christine , Petermann-Meyer, Andrea , Müller, Susanne , 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 , Akkaya, Federica , Babka, Christine , Bârlescu, Lavinia , Bergbreiter, Astrid , Blömeke, Janika , Böhm, Leonie , Böttger, Benita , Braun, Birgit , Brinkmann, Folke , Britz, Vanessa , Cario, Holger , Celiker, Melisa , de Greck, Moritz , Debatin, Klaus-Michael , Dillmann-Jehn, Katrin , Ertl, Max , Ettinger, Monika , Eymann, Jutta , Frommer, Jörg , Gödecke, Vega , Grauer, Eva , Greger, Helmut , Haas, Astrid , Haase, Martina , Haisch, Lea , Heinrich, Isabel , Held, Melissa , Herrmann-Werner, Anne , Hilbig, Bettina , Holthöfer, Laura , Imhof, Christiane , Jacob, Titus , Junne, Florian , Karl, Stefanie , Kassubek, Jan , Kick, Lisa , Koschitzki, Kevin-Thomas , Kratz, Christian , Kristensen, Kaja , Kropff, Birgit , Kuhn, Julia , Loew, Thomas , Ludolph, Albert C , dos Santos, Isabell Meyer , Mohnike, Klaus , Musacchio, Thomas , Nanciu, Amalia Nicole , Niessen, Margret , Papagianni, Aikaterini , Pfeifer-Duck, Christina , Piduhn, Lea-Sophie , Rampp, Carina , Richter, Antonia , Riess, Olaf , Schmidt, Annika , Schneider, Simone , Schoels, Ludger , Schwalba, Martina , Selig, Udo , Spangenberger, Astrid , Sroka, Alexandra , Steinbüchel, Toni , Suchant, Steffi , Vogel, Matthias , Volk, Daniela , Vollmuth, Christoph , Volnov, Solange , Walter, Sabrina , Weiler, Christine , Witt, Stefanie , Zajt, Kamil Kajetan , Zeltner, Lena , Zenker, Karola and Zipfel, Stephan

Publisher

BioMed Central Ltd

Journal title

Orphanet Journal of Rare Diseases, 2022, Vol.17 (1)

Language

English

Formats

Publication information

Publisher

BioMed Central Ltd

More information

Scope and Contents

Contents

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 of mental disorders that may complicate and delay the diagnostic pro...

Alternative Titles

Full title

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

Authors, Artists and Contributors

Author / Creator

Hebestreit, Helge
Zeidler, Cornelia
Bullinger, Monika
Berger, Alexandra
Berneburg, Mark
Brandstetter, Lilly
Deibele, Anna
Graessner, Holm
Gündel, Harald
Heuft, Gereon
Lapstich, Anne-Marie
Lücke, Thomas
Mundlos, Christine
Petermann-Meyer, Andrea
Müller, Susanne
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
Akkaya, Federica
Babka, Christine
Bârlescu, Lavinia
Bergbreiter, Astrid
Blömeke, Janika
Böhm, Leonie
Böttger, Benita
Braun, Birgit
Brinkmann, Folke
Britz, Vanessa
Cario, Holger
Celiker, Melisa
de Greck, Moritz
Debatin, Klaus-Michael
Dillmann-Jehn, Katrin
Ertl, Max
Ettinger, Monika
Eymann, Jutta
Frommer, Jörg
Gödecke, Vega
Grauer, Eva
Greger, Helmut
Haas, Astrid
Haase, Martina
Haisch, Lea
Heinrich, Isabel
Held, Melissa
Herrmann-Werner, Anne
Hilbig, Bettina
Holthöfer, Laura
Imhof, Christiane
Jacob, Titus
Junne, Florian
Karl, Stefanie
Kassubek, Jan
Kick, Lisa
Koschitzki, Kevin-Thomas
Kratz, Christian
Kristensen, Kaja
Kropff, Birgit
Kuhn, Julia
Loew, Thomas
Ludolph, Albert C
dos Santos, Isabell Meyer
Mohnike, Klaus
Musacchio, Thomas
Nanciu, Amalia Nicole
Niessen, Margret
Papagianni, Aikaterini
Pfeifer-Duck, Christina
Piduhn, Lea-Sophie
Rampp, Carina
Richter, Antonia
Riess, Olaf
Schmidt, Annika
Schneider, Simone
Schoels, Ludger
Schwalba, Martina
Selig, Udo
Spangenberger, Astrid
Sroka, Alexandra
Steinbüchel, Toni
Suchant, Steffi
Vogel, Matthias
Volk, Daniela
Vollmuth, Christoph
Volnov, Solange
Walter, Sabrina
Weiler, Christine
Witt, Stefanie
Zajt, Kamil Kajetan
Zeltner, Lena
Zenker, Karola
Zipfel, Stephan

Identifiers

Primary Identifiers

Record Identifier

TN_cdi_gale_infotracmisc_A699458466

Permalink

https://devfeature-collection.sl.nsw.gov.au/record/TN_cdi_gale_infotracmisc_A699458466

Other Identifiers

ISSN

1750-1172

E-ISSN

1750-1172

DOI

10.1186/s13023-022-02176-1

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