EndoERN patient survey on their perception of health care experience and of unmet needs for rare endocrine diseases
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DOI: 10.1007/s12020-021-02625-0
Abstract: Patients’ perceptions on quality of care and gaps in diagnosis/management of rare endocrine diseases (RED) were collected in a 21-item questionnaire, answered on-line in the patients’ language. There were 598 (66% females) responses from 29… read more here.
Keywords: endocrine diseases; health care; care; endocrine ... See more keywords
Perspectives of the European Society of Endocrinology (ESE) and the European Society of Paediatric Endocrinology (ESPE) on rare endocrine disease
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DOI: 10.1007/s12020-021-02652-x
Abstract: Rare diseases affect read more here.
Keywords: endocrine disease; endocrinology; european society; endocrine conditions ... See more keywords
Transition readiness among adolescents with rare endocrine conditions
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DOI: 10.1530/ec-20-0304
Abstract: Objective Adolescents and young adults (AYA) with common endocrine disorders show a high dropout (up to 50%) after the transfer from paediatric to adult endocrinology. Little is known about transition readiness in rare endocrine conditions… read more here.
Keywords: rare endocrine; transition readiness; endocrine conditions; transition ... See more keywords
A critical evaluation of the EU-virtual consultation platform (CPMS) within the European Reference Network on Rare Endocrine Conditions
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DOI: 10.1530/ec-22-0281
Abstract: In 2017, the European Commission installed 24 European Reference Networks (ERNs) for different categories of rare and complex conditions to facilitate cross-border health care via virtual case consultations in a secure Clinical Patient Management System… read more here.
Keywords: european reference; system; evaluation; network ... See more keywords
The Uncharted Landscape of Rare Endocrine Immune-Related Adverse Events
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DOI: 10.3390/cancers15072016
Abstract: Simple Summary Immune checkpoint inhibitors (ICIs) are considered to be the standard of care in multiple types of cancers. However, ICIs are implicated in a wide range of side effects, referred to as immune-related adverse… read more here.
Keywords: rare endocrine; immune related; iraes; related adverse ... See more keywords