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Research
[x]
Sacherschließung
Rare diseases
(8)
Humans [MeSH]
(8)
Registries/ Health Planning/ Health Services
(4)
Surveys and Questionnaires [MeSH]
(3)
Quality of Life [MeSH]
(3)
Female [MeSH]
(3)
Rare Diseases/diagnosis [MeSH]
(2)
Rare Diseases [MeSH]
(2)
Pediatric surgery
(2)
Publikationstyp
Artikel
(8)
Medium
Erscheinungsjahr
2024
(3)
2021
(5)
Institution
8 Treffer
Kurzansicht
E-Jahr
Zugriff
Typ
Operations
Correlation between measured oral health and oral health-related quality of life in people with epidermolysis bullosa: a prospective cohort study
2024 .
Joanning, Theresa
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Trento, Guilherme
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Köppe, Jeanette
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Daume, Linda
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Kleinheinz, Johannes
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Hanisch, Marcel
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Oelerich, Ole
2024
http://purl.org/ontology/bibo/Article
Objectivizing issues in the diagnosis of complex rare diseases: lessons learned from testing existing diagnosis support systems on ciliopathies
2024 .
Faviez, Carole
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Chen, Xiaoyi
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Garcelon, Nicolas
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Zaidan, Mohamad
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Billot, Katy
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Petzold, Friederike
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Faour, Hassan
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Douillet, Maxime
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Rozet, Jean-Michel
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Cormier-Daire, Valérie
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Attié-Bitach, Tania
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Lyonnet, Stanislas
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Saunier, Sophie
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Burgun, Anita
2024
http://purl.org/ontology/bibo/Article
Inventory of current practices regarding hematopoietic stem cell transplantation in metachromatic leukodystrophy in Europe and neighboring countries
2024 .
Schoenmakers, Daphne H.
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Mochel, Fanny
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Adang, Laura A.
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Boelens, Jaap-Jan
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Calbi, Valeria
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Eklund, Erik A.
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Grønborg, Sabine W.
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Fumagalli, Francesca
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Groeschel, Samuel
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Lindemans, Caroline
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Sevin, Caroline
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Schöls, Ludger
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Ram, Dipak
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Zerem, Ayelet
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Graessner, Holm
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Wolf, Nicole Ingeborg
2024
http://purl.org/ontology/bibo/Article
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
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Göbel, Jens
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Kadioglu, Dennis
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Britz, Vanessa
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Schubert, Katharina
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Mohnike, Klaus
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Storf, Holger
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Wagner, Thomas O. F.
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
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von Kodolitsch, Yskert
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Klose, Hans F. E.
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Mautner, Victor-Felix
|
Löwe, Bernd
2021
http://purl.org/ontology/bibo/Article
The combined prevalence of classified rare rheumatic diseases is almost double that of ankylosing spondylitis
2021 .
Leyens, Judith
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Bender, Tim Th. A.
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Mücke, Martin
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Stieber, Christiane
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Kravchenko, Dmitrij
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Dernbach, Christian
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Seidel, Matthias
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
|
Boettcher, Johannes
|
Barkmann, Claus
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Zapf, Holger
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Nazarian, Rojin
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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
