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The Myositis Clinical Trials Consortium: an international collaborative initiative to promote clinical trials in adult and juvenile myositis

  • Anuradha Bishnoi
  • , Iris Yan Ki Tang
  • , Akira Yoshida
  • , Faye M. Pais
  • , Sabeena Y. Usman
  • , Solciris Dominguez
  • , Chengappa G. Kavadichanda
  • , Daphne Rivero-Gallegos
  • , Eduardo Dourado
  • , Edoardo Conticini
  • , Francisca Bozán
  • , Gayathri Tulluru
  • , James B. Lilleker
  • , Kaushik Sreerama Reddy
  • , Océane Landon-Cardinal
  • , Rachid Smaili
  • , Shiri Keret
  • , Thomas Khoo
  • , Ting-Yuan Lan
  • , Valérie Leclair
  • Chester V. Oddis, Jiří Vencovský, Masataka Kuwana, Prateek C. Gandiga*, Rohit Aggarwal*, Myositis Clinical Trials Consortium investigators
*Corresponding author for this work
  • Postgraduate Institute of Medical Education and Research
  • The University of Hong Kong
  • Nippon Medical School
  • University of Florida
  • Emory University
  • University of Pittsburgh
  • RheumaCARE
  • Instituto Nacional de Enfermedades Respiratorias
  • Unidade Local de Saúde da Região de Aveiro
  • Egas Moniz Health Alliance
  • University of Lisbon
  • University of Siena
  • Universidad de Chile
  • Northern Care Alliance NHS Foundation Trust
  • Duke University
  • St. Luc Hospital
  • University Hospital of Tangier
  • Technion-Israel Institute of Technology
  • University of Adelaide
  • National Taiwan University
  • McGill University
  • Jewish General Hospital (Montreal)
  • Charles University

Research output: Contribution to journalArticleAcademicpeer-review

43 Downloads (Pure)

Abstract

Idiopathic inflammatory myopathies (IIM), or myositis, are a heterogeneous group of systemic autoimmune disorders that are associated with significant morbidity and mortality. Conducting high-quality clinical trials in IIM is challenging due to the rare and variable presentations of disease. To address this challenge, the Myositis Clinical Trials Consortium (MCTC) was formed. MCTC is a collaborative international alliance dedicated to facilitating, promoting, coordinating and conducting clinical trials and related research in IIM. This partnership works to advance the discovery of effective evidence-based treatments for IIM by integrating a diverse group of clinical investigators, research professionals, medical centres, patient groups, and industry partners. The Steering Committee, Core Group, and Paediatric Subcommittee of MCTC are comprised of myositis experts and junior investigators from around the world, representing a diversity of genders, geographies, and subspecialties. MCTC works alongside other current myositis organisations to complement existing work by concentrating on the operationalisation of clinical trials. Our pilot Myositis Investigators’ Information Survey gathered responses from 173 myositis investigators globally and found considerable variability in proficiency with outcome measures, geographic disparities in patient recruitment, and a significant disconnect between investigators’ routine myositis patient load and clinical trial enrolment. MCTC will meet the need to support and diversify myositis clinical trials by facilitating trial planning, feasibility assessments, site selection, and the training and mentoring of junior investigators/centres to establish their readiness for clinical trial participation. Through experienced leadership, strategic collaborations, and interdisciplinary discussions, MCTC will establish standards for IIM clinical trial design, protocols, and outcome measures in myositis.
Original languageEnglish
Pages (from-to)202-210
Number of pages9
JournalClinical and experimental rheumatology
Volume43
Issue number2
DOIs
Publication statusPublished - 1 Feb 2025

Keywords

  • clinical trials
  • myositis
  • organisation and administration
  • outcome assessment
  • rare diseases

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