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How to design a registry for undiagnosed patients in the framework of rare disease diagnosis: suggestions on software, data set and coding system

2021 . Berger, Alexandra | Rustemeier, Anne-Kathrin | Göbel, Jens | Kadioglu, Dennis | Britz, Vanessa | Schubert, Katharina | Mohnike, Klaus | Storf, Holger | Wagner, Thomas O. F.

Potentials and current shortcomings in the cooperation between German centers for rare diseases and primary care physicians: results from the project TRANSLATE-NAMSE

2021 . Druschke, Diana | Krause, F. | Müller, G. | Scharfe, J. | Hoffmann, G. F. | Schmitt, J.

Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany

2021 . Witt, Stefanie | Kristensen, Kaja | Wiegand-Grefe, Silke | Boettcher, Johannes | Bloemeke, Janika | Wingartz, Christina | Bullinger, Monika | Quitmann, Julia

Supportive care needs of patients with rare chronic diseases: multi-method, cross-sectional study

2021 . Depping, Miriam Katharina | Uhlenbusch, Natalie | von Kodolitsch, Yskert | Klose, Hans F. E. | Mautner, Victor-Felix | Löwe, Bernd

Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic

2021 . Fuerboeter, Mareike | Boettcher, Johannes | Barkmann, Claus | Zapf, Holger | Nazarian, Rojin | Wiegand-Grefe, Silke | Reinshagen, Konrad | Boettcher, Michael

Perceived mental health in parents of children with rare congenital surgical diseases: a double ABCX model considering gender

2021 . Boettcher, Johannes | Zapf, Holger | Fuerboeter, Mareike | Nazarian, Rojin | Reinshagen, Konrad | Wiegand-Grefe, Silke | Boettcher, Michael

Diagnosis of Rare Diseases: a scoping review of clinical decision support systems

2020 . Schaaf, Jannik | Sedlmayr, Martin | Schaefer, Johanna | Storf, Holger