Facing the complex challenges of people with epidermolysis bullosa in Austria: a mixed methods study on burdens and helpful practices
Salamon, Gudrun, Field-Werners, Ursula, Strobl, Sophie, Hübl, Vinzenz, Diem, Anja
Published in Orphanet journal of rare diseases (21.05.2024)
Published in Orphanet journal of rare diseases (21.05.2024)
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Journal Article
Psychometric Properties of the Instrument for Scoring Clinical Outcomes of Research for Epidermolysis Bullosa patient score (iscorEB-p): a patient-reported outcome measure
Salamon, Gudrun, Strobl, Sophie, Field-Werners, Ursula, Diem, Anja, Schwieger-Briel, Agnes, Pope, Elena
Published in British journal of dermatology (1951) (20.06.2024)
Published in British journal of dermatology (1951) (20.06.2024)
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Journal Article
The psychosocial impact of a chronic disease in Ireland: Burdens and helpful practices for a life with epidermolysis bullosa
Salamon, Gudrun, Field‐Werners, Ursula, Strobl, Sophie, Hübl, Vinzenz, Diem, Anja
Published in Health expectations : an international journal of public participation in health care and health policy (01.06.2024)
Published in Health expectations : an international journal of public participation in health care and health policy (01.06.2024)
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Journal Article
Translation, cultural adaptation and validation of the German Quality of Life in Epidermolysis Bullosa (QOLEB) questionnaire
Salamon, Gudrun, Strobl, Sophie, Field-Werners, Ursula, Welponer, Tobias, Murrell, Dédée F, Diem, Anja
Published in Journal of health psychology (18.02.2024)
Published in Journal of health psychology (18.02.2024)
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Journal Article
Towards a roadmap for COSEB: the next steps in harmonization of outcomes for epidermolysis bullosa
Korte, Eva W H, Pasmooij, Anna M G, Bolling, Maria C, Hickey, Sinéad, Hussain, Sagair, Kiritsi, Dimitra, Kottner, Jan, Prinsen, Cecilia A C, Sauvestre, Angélique, Sendin, Gaston, Spuls, Phyllis I, Tarrats, Núria, Wally, Verena, Welponer, Tobias, Laimer, Martin, van den Akker, Peter C
Published in British journal of dermatology (1951) (14.08.2024)
Published in British journal of dermatology (1951) (14.08.2024)
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Journal Article