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Surveys and Questionnaires [MeSH]
[x]
Sacherschließung
Research
(9)
Humans [MeSH]
(9)
Registries/ Health Planning/ Health Services
(4)
Quality of Life [MeSH]
(4)
Rare diseases
(3)
Germany [MeSH]
(3)
Female [MeSH]
(3)
Rare disease
(2)
Rare Diseases [MeSH]
(2)
Publikationstyp
Artikel
(9)
Medium
Erscheinungsjahr
2021
(6)
2020
(3)
Institution
9 Treffer
Kurzansicht
E-Jahr
Zugriff
Typ
Operations
Parent–child-agreement on health-related quality of life and its determinants in patients born with Esophageal Atresia: a Swedish–German cross-sectional study
2021 .
Witt, Stefanie
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Dellenmark-Blom, Michaela
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Kuckuck, Susanne
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Dingemann, Jens
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Abrahamsson, Kate
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Dingemann, Carmen
|
Chaplin, John Eric
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Ure, Benno
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Bullinger, Monika
|
Gatzinsky, Vladimir
|
Jönsson, Linus
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Quitmann, Julia Hannah
2021
http://purl.org/ontology/bibo/Article
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.
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Müller, G.
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Scharfe, J.
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Hoffmann, G. F.
|
Schmitt, J.
2021
http://purl.org/ontology/bibo/Article
Impact of glycogen storage disease type I on adult daily life: a survey
2021 .
Garbade, Sven F.
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Ederer, Viviane
|
Burgard, Peter
|
Wendel, Udo
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Spiekerkoetter, Ute
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Haas, Dorothea
|
Grünert, Sarah Catharina
2021
http://purl.org/ontology/bibo/Article
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
2021
http://purl.org/ontology/bibo/Article
Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic
2021 .
Fuerboeter, Mareike
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Boettcher, Johannes
|
Barkmann, Claus
|
Zapf, Holger
|
Nazarian, Rojin
|
Wiegand-Grefe, Silke
|
Reinshagen, Konrad
|
Boettcher, Michael
2021
http://purl.org/ontology/bibo/Article
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
2021
http://purl.org/ontology/bibo/Article
English version of the self-administered Fabry Pain Questionnaire for adult patients
2020 .
Jovanovic, Ana
|
Klassen, Philipp
|
Heuschmann, Peter
|
Sommer, Claudia
|
Roberts, Mark
|
Üçeyler, Nurcan
2020
http://purl.org/ontology/bibo/Article
Patient-reported outcomes on familial amyloid polyneuropathy (FAP)
2020 .
Bolte, Fabian Johannes
|
Langenstroer, Christel
|
Friebel, Frauke
|
Hüsing-Kabar, Anna
|
Dugas, Martin
|
Schmidt, Hartmut H.
2020
http://purl.org/ontology/bibo/Article
A Germany-wide survey study on the patient journey of patients with hereditary angioedema
2020 .
Magerl, Markus
|
Gothe, Holger
|
Krupka, Simon
|
Lachmann, Anja
|
Ohlmeier, Christoph
2020
http://purl.org/ontology/bibo/Article
