Institutional Research Information Service
UCL Logo
Please report any queries concerning the funding data grouped in the sections named "Externally Awarded" or "Internally Disbursed" (shown on the profile page) to your Research Finance Administrator. Your can find your Research Finance Administrator at https://www.ucl.ac.uk/finance/research/rs-contacts.php by entering your department
Please report any queries concerning the student data shown on the profile page to:

Email: portico-services@ucl.ac.uk

Help Desk: http://www.ucl.ac.uk/ras/portico/helpdesk
Publication Detail
Current status of clinical outcome measures in inclusion body myositis: a systematised review.
  • Publication Type:
    Journal article
  • Publication Sub Type:
  • Authors:
    Roy B, Lucchini M, Lilleker JB, Goyal NA, Naddaf E, Adler B, Alfano LN, Malandraki GA, Focht Garand KL, Mochel D, Badrising U, Machado PM, Pagkatipunan R, Wang L, Funaro MC, Schmidt J, Kushlaf H, Schiopu E, Stipancic K, Goyal N, d'Alessandro M, Conticini E, Cruz-Coble B, Lloyd TE, International Myositis Assessment and Clinical Studies (IMACS) Inclusion Body Myositis Scientific Interest Group
  • Publisher:
    Clinical and Experimental Rheumatology Sas
  • Publication date:
  • Journal:
    Clinical and Experimental Rheumatology
  • Status:
    Published online
  • Country:
  • Print ISSN:
  • PII:
  • Language:
OBJECTIVES: Sporadic inclusion body myositis (IBM) is a debilitating idiopathic inflammatory myopathy (IIM) which affects hand function, ambulation, and swallowing. There is no approved pharmacological therapy for IBM, and there is a lack of suitable outcome measure to assess the effect of an intervention. The IBM scientific interest group under IMACS reviewed the previously used outcome measures in IBM clinical studies to lay the path for developing a core set of outcome measures in IBM. METHODS: In this systematised review, we have extracted all outcome measures reported in IBM clinical studies to determine what measures were being used and to assess the need for optimising outcome measures in IBM. RESULTS: We found 13 observational studies, 17 open-label clinical trials, and 15 randomised control trials (RCTs) in IBM. Six-minute walk distance, IBM-functional rating scale (IBM-FRS), quantitative muscle testing, manual muscle testing, maximal voluntary isometric contraction testing, and thigh muscle volume measured by MRI were used as primary outcome measures. Twelve different outcome measures of motor function were used in IBM clinical trials. IBM-FRS was the most used measure of functionality. Swallowing function was reported as a secondary outcome measure in only 3 RCTs. CONCLUSIONS: There are inconsistencies in using outcome measures in clinical studies in IBM. The core set measures developed by the IMACS group for other IIMs are not directly applicable to IBM. As a result, there is an unmet need for an IBM-specific core set of measures to facilitate the evaluation of new potential therapeutics for IBM.
Publication data is maintained in RPS. Visit https://rps.ucl.ac.uk
 More search options
UCL Researchers
Department of Neuromuscular Diseases
UCL Queen Square Institute of Neurology
University College London - Gower Street - London - WC1E 6BT Tel:+44 (0)20 7679 2000

© UCL 1999–2011

Search by