Ehlers-Danlos syndromes: state of the art on clinical practice guidelines
| Autor: | Marta Mosca, Fransiska Malfait, Tadej Avcin, Stefano Bombardieri, Charissa Frank, Vanessa Smith, Sabrina Paolino, Carlo Alberto Scirè, Alessandro Ferraris, Marco Castori, Rosaria Talarico, Jürgen Grunert, Matthias Schneider, Alberto Sulli, Maurizio Cutolo |
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| Přispěvatelé: | Sulli, A, Talarico, R, Scire, C, Avcin, T, Castori, M, Ferraris, A, Frank, C, Grunert, J, Paolino, S, Bombardieri, S, Schneider, M, Smith, V, Cutolo, M, Mosca, M, Malfait, F |
| Jazyk: | angličtina |
| Rok vydání: | 2018 |
| Předmět: |
0301 basic medicine
medicine.medical_specialty Immunology Psychological intervention unmet needs European Reference Network Disease 030105 genetics & heredity ERN ReCONNET Ehlers-Danlos syndromes European Reference Networks clinical practice guidelines DIAGNOSIS FATIGUE Patient care CLASSIFICATION Unmet needs NO 03 medical and health sciences Rheumatology Medicine and Health Sciences MANAGEMENT Immunology and Allergy Medicine Intensive care medicine Connective Tissue Diseases business.industry GENERALIZED JOINT HYPERMOBILITY PAIN clinical practice guidelines Ehlers-Danlos syndromes ERN ReCONNET European Reference Networks unmet needs Ehlers danlos Clinical Practice 030104 developmental biology MANIFESTATIONS business Ehlers-Danlos syndrome clinical practice guideline Systematic search |
| Zdroj: | RMD Open RMD OPEN |
| ISSN: | 2056-5933 |
| Popis: | ObjectiveTo report the effort of the European Reference Network for Rare and Complex CONnective tissue and musculoskeletal diseases NETwork working group on Ehlers-Danlos syndromes (EDS) and related disorders to assess current available clinical practice guidelines (CPGs) specifically addressed to EDS, in order to identify potential clinician and patient unmet needs.MethodsSystematic literature search in PUBMED and EMBASE based on controlled terms (MeSH and Emtree) and keywords of the disease and publication type (CPGs). All the published articles were revised in order to identify existing CPGs on diagnosis, monitoring and treatment of EDS.ResultsLiterature revision detected the absence of papers reporting good quality CPGs to optimise EDS patient care. The current evidence-based literature regarding clinical guidelines for the EDS was limited in size and quality, and there is insufficient research exploring the clinical features and interventions, and clinical decision-making are currently based on theoretical and limited research evidences.ConclusionsMany clinician and patient unmet needs have been identified. |
| Databáze: | OpenAIRE |
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