Meyer, Alain, Scire, Carlo Alberto, Talarico, Rosaria, Alexander, Tobias, Amoura, Zahir, Avcin, Tadej, Barsotti, Simone ORCID: 0000-0002-4864-4505, Beretta, Lorenzo, Blagojevic, Jelena, Burmester, Gerd, Cavazzana, Ilaria, Cherrin, Patrick, Damian, Laura, Doria, Andrea ORCID: 0000-0003-0548-4983, Fonseca, Joao Eurico, Furini, Federica ORCID: 0000-0002-0295-1913, Galetti, Ilaria, Houssiau, Frederic, Krieg, Thomas, Larosa, Maddalena, Launay, David, Campanilho-Marques, Raquel, Martin, Thierry, Matucci-Cerinic, Marco, Moinzadeh, Pia, Montecucco, Carlomaurizio, Moraes-Fontes, Maria Francisca ORCID: 0000-0002-8917-6592, Mouthon, Luc, Neri, Rossella, Paolino, Sabrina, Piette, Yves, Rednic, Simona, Tamirou, Farah, Tincani, Angela, Toplak, Natasa, Bombardieri, Stefano, Hachulla, Eric, Mueller-Ladner, Ulf, Schneider, Matthias, Smith, Vanessa, Vieira, Ana, Cutolo, Maurizio, Mosca, Marta and Cavagna, Lorenzo (2018). Idiopathic inflammatory myopathies: state of the art on clinical practice guidelines. RMD Open, 4. LONDON: BMJ PUBLISHING GROUP. ISSN 2056-5933

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Abstract

Idiopathic inflammatory myopathies (IIMs) encompass a heterogeneous group of rare autoimmune diseases characterised by muscle weakness and inflammation, but in antisynthetase syndrome arthritis and interstitial lung disease are more frequent and often inaugurate the disease. Clinical practice guidelines (CPGs) have been proposed for IIMs, but they are sparse and heterogeneous. This work aimed at identifying: i) current available CPGs for IIMs, ii) patients' and clinicians' unmet needs not covered by CPGs. It has been performed in the framework of the European Reference Network on rare and complex connective tissue and musculoskeletal diseases (ReCONNET), a network of centre of expertise and patients funded by the European Union's Health Programme. Fourteen original CPGs were identified, notably recommending that: i) extra-muscular involvements should be assessed; ii) corticosteroids and methotrexate or azathioprine are first-line therapies of IIMs. iii) IVIG is a treatment of resistant-DM that may be also used in other resistant-IIMs; iv) physical therapy and sun protection (in DM patients) are part of the treatment; v) tumour screening for patients with DM include imaging of chest, abdomen, pelvis and breast (in woman) along with colonoscopy (in patients over 50 years); vi) disease activity and damages should be monitor using standardised and validated tools. Yet, only half of these CPGs were evidence-based. Crucial unmet needs were identified both by patients and clinicians. In particular, there was a lack of large multidisciplinary working group and of patients' preferences. The following fields were not or inappropriately targeted: diagnosis; management of extra-muscular involvements other than skin; co-morbidities and severe manifestations.

Item Type: Journal Article
Creators:
CreatorsEmailORCIDORCID Put Code
Meyer, AlainUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Scire, Carlo AlbertoUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Talarico, RosariaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Alexander, TobiasUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Amoura, ZahirUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Avcin, TadejUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Barsotti, SimoneUNSPECIFIEDorcid.org/0000-0002-4864-4505UNSPECIFIED
Beretta, LorenzoUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Blagojevic, JelenaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Burmester, GerdUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Cavazzana, IlariaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Cherrin, PatrickUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Damian, LauraUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Doria, AndreaUNSPECIFIEDorcid.org/0000-0003-0548-4983UNSPECIFIED
Fonseca, Joao EuricoUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Furini, FedericaUNSPECIFIEDorcid.org/0000-0002-0295-1913UNSPECIFIED
Galetti, IlariaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Houssiau, FredericUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Krieg, ThomasUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Larosa, MaddalenaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Launay, DavidUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Campanilho-Marques, RaquelUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Martin, ThierryUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Matucci-Cerinic, MarcoUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Moinzadeh, PiaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Montecucco, CarlomaurizioUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Moraes-Fontes, Maria FranciscaUNSPECIFIEDorcid.org/0000-0002-8917-6592UNSPECIFIED
Mouthon, LucUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Neri, RossellaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Paolino, SabrinaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Piette, YvesUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Rednic, SimonaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Tamirou, FarahUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Tincani, AngelaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Toplak, NatasaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Bombardieri, StefanoUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hachulla, EricUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mueller-Ladner, UlfUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Schneider, MatthiasUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Smith, VanessaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Vieira, AnaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Cutolo, MaurizioUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mosca, MartaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Cavagna, LorenzoUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
URN: urn:nbn:de:hbz:38-168449
DOI: 10.1136/rmdopen-2018-000784
Journal or Publication Title: RMD Open
Volume: 4
Date: 2018
Publisher: BMJ PUBLISHING GROUP
Place of Publication: LONDON
ISSN: 2056-5933
Language: English
Faculty: Unspecified
Divisions: Unspecified
Subjects: no entry
Uncontrolled Keywords:
KeywordsLanguage
INTRAVENOUS IMMUNOGLOBULIN; JUVENILE DERMATOMYOSITIS; HIKERS FEET; CONSENSUS; MYOSITIS; POLYMYOSITIS; MANAGEMENT; ADULT; MORTALITY; ARTHRITISMultiple languages
RheumatologyMultiple languages
Refereed: Yes
URI: http://kups.ub.uni-koeln.de/id/eprint/16844

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