换一批
换一批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.
第一作者：
Helge,Hebestreit
第一单位：
Center for Rare Diseases - Reference Center Northern Bavaria (ZESE), University Hospital Würzburg, Josef-Schneider-Str. 2, 97080, Würzburg, Germany. hebestreit@uni-wuerzburg.de.
作者：
Helge,Hebestreit [1]
;
Cornelia,Zeidler [2]
;
Christopher,Schippers [3]
;
Martina,de Zwaan [4]
;
Jürgen,Deckert [5]
;
Peter,Heuschmann [6]
;
Christian,Krauth [7]
;
Monika,Bullinger [8]
;
Alexandra,Berger [9]
;
Mark,Berneburg [10]
;
Lilly,Brandstetter [6]
;
Anna,Deibele [11]
;
Jan,Dieris-Hirche [12]
;
Holm,Graessner [13]
;
Harald,Gündel [14]
;
Stephan,Herpertz [12]
;
Gereon,Heuft [15]
;
Anne-Marie,Lapstich [7]
;
Thomas,Lücke [16]
;
Tim,Maisch [10]
;
Christine,Mundlos [17]
;
Andrea,Petermann-Meyer [18]
;
Susanne,Müller [19]
;
Stephan,Ott [20]
;
Lisa,Pfister [21]
;
Julia,Quitmann [8]
;
Marcel,Romanos [22]
;
Frank,Rutsch [23]
;
Kristina,Schaubert [7]
;
Katharina,Schubert [24]
;
Jörg B,Schulz [25]
;
Susann,Schweiger [26]
;
Oliver,Tüscher [27]
;
Kathrin,Ungethüm [6]
;
Thomas O F,Wagner [9]
;
Kirsten,Haas [6]
;
ZSE-DUO working group
作者单位：
Center for Rare Diseases - Reference Center Northern Bavaria (ZESE), University Hospital Würzburg, Josef-Schneider-Str. 2, 97080, Würzburg, Germany. hebestreit@uni-wuerzburg.de.
[1]
Center for Rare Diseases, Hannover Medical School, Carl-Neuberg-Strasse 1, 30625, Hannover, Germany.
[2]
Center for Rare Diseases, RWTH Aachen University Hospital, Pauwelsstraße 30, 52074, Aachen, Germany.
[3]
Department of Psychosomatic Medicine and Psychotherapy, Hannover Medical School, Carl-Neuberg-Strasse 1, 30625, Hannover, Germany.
[4]
Center for Rare Diseases - Reference Center Northern Bavaria (ZESE), University Hospital Würzburg, Josef-Schneider-Str. 2, 97080, Würzburg, Germany.;Department of Psychiatry, Psychosomatics and Psychotherapy, Center of Mental Health, University Hospital, Margarete-Höppel-Platz 1, 97080, Würzburg, Germany.
[5]
Institute of Clinical Epidemiology and Biometry, University of Würzburg, Josef-Schneider-Str. 2, 97080, Würzburg, Germany.
[6]
Center for Health Economics Research Hannover and Institute for Epidemiology, Social Medicine and Health Systems Research, Hannover Medical School, Carl-Neuberg-Strasse 1, 30625, Hannover, Germany.
[7]
Department for Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistr. 52, 20246, Hamburg, Germany.
[8]
Frankfurt Reference Centre for Rare Diseases, University Hospital Frankfurt, Goethe University Frankfurt, Theodor-Stern-Kai 7, 60590, Frankfurt am Main, Germany.
[9]
Center for Rare Diseases Regensburg, University Hospital Regensburg, Franz-Josef-Strauss-Allee 11, 93053, Regensburg, Germany.
[10]
Department of Psychosomatic Medicine and Psychotherapy, University Hospital Magdeburg, Leipziger Straße 44, 39120, Magdeburg, Germany.
[11]
Department of Psychosomatic Medicine and Psychotherapy, LWL-University Clinic, Ruhr-University Bochum, Alexandrinenstraße 1-3, 44791, Bochum, Germany.
[12]
Centre for Rare Disease, University Hospital Tübingen, Calwerstr. 7, 72076, Tübingen, Germany.
[13]
Department of Psychosomatic Medicine and Psychotherapy, University Hospital Ulm, Albert.-Einstein-Allee 23, 89081, Ulm, Germany.
[14]
Department of Psychosomatic Medicine Und Psychotherapy, University Hospital Münster, Albert-Schweitzer-Campus 1, 48149, Münster, Germany.
[15]
University Hospital of Pediatrics and Adolescent Medicine, Ruhr-University Bochum, Alexandrinenstr. 5, 44791, Bochum, Germany.
[16]
Allianz Chronischer Seltener Erkrankungen (ACHSE) e.V., c/o DRK Kliniken Berlin Mitte, Dronheimer Str. 39, 13359, Berlin, Germany.;ACHSE e.V., Berlin, Germany.
[17]
Department of Hematology, Oncology, Hemostaseology and Stem Cell Transplantation, Section Psychooncology, Center for Integrated Oncology - Aachen, Medical Faculty, RWTH Aachen University, Aachen, Germany.
[18]
Department of Neurology, University of Ulm, Oberer Eselsberg 45, 89081, Ulm, Germany.
[19]
Centre for Rare Disease, University Hospital Tübingen, Calwerstr. 7, 72076, Tübingen, Germany.;Department of Psychosomatics and Psychotherapy, University Hospital Tübingen, Osianderstraße 5, 72076, Tübingen, Germany.
[20]
Center for Rare Diseases - Reference Center Northern Bavaria (ZESE), University Hospital Würzburg, Josef-Schneider-Str. 2, 97080, Würzburg, Germany.
[21]
Department of Child Psychiatry, Psychosomatics and Psychotherapy, Center of Mental Health, University Hospital Würzburg, Margarete-Höppel-Platz 1, 97080, Würzburg, Germany.
[22]
Department of General Pediatrics, Muenster University Children's Hospital and Center for Rare Diseases, Muenster University Hospital, Albert-Schweitzer-Campus 1, Gebäude A1, 48149, Münster, Germany.
[23]
Central German Competence Network for Rare Diseases, University Hospital Magdeburg, Leipziger Straße 44, 39120, Magdeburg, Germany.
[24]
Center for Rare Diseases, RWTH Aachen University Hospital, Pauwelsstraße 30, 52074, Aachen, Germany.;Department of Neurology, RWTH Aachen University, Pauwelsstraße 30, 52074, Aachen, Germany.
[25]
Centre for Rare Disease and Institute for Human Genetics, University Medical Center, Johannes Gutenberg University, 55131, Mainz, Germany.
[26]
Centre for Rare Disease and Department of Psychiatry and Psychotherapy, University Medical Center, Johannes Gutenberg University, 55131, Mainz, Germany.
[27]
主题词
儿童(Child);队列研究(Cohort Studies);诊断, 鉴别(Diagnosis, Differential);人类(Humans);多中心研究(主题)(Multicenter Studies as Topic);前瞻性研究(Prospective Studies);生活质量(Quality of Life);少见病(Rare Diseases);治疗结果(Treatment Outcome)
DOI
10.1186/s13023-022-02176-1
PMID
35164804
发布时间
2024-08-22
- 浏览2
Orphanet journal of rare diseases
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