info for researchers

MMT8 Assessment

CMAS Assessment

Data Collection Forms

• Initial Presentation Form
• Clinic Visit Form
• Annual Visit Form
• Health Assessment Questionnaires
• Physiotherapy Assessment –  CMAS and MMT8
• Flare Form

Study Protocol and Corresponding Documents

• Protocol JDCBS
• Child/Young Person, Patient, Physician Information Sheets
• Under 16 yrs, Over 16 yrs, Parent/Guardian Consent Forms
• What to Collect and When Gantt Chart
• Blood Collection  Form
• Security Policy
• Discharge Form
• Email Address Collection Form
• Study Overview

Other Useful Documents

• Ethnicity Definitions for New JDM Clinic Recruits
  
• Participating Centres in JDRG
  
• Saliva Collection Request Letter for Parents
  
• Gantt Chart
  
• JDRG Newsletter
  
• MMT8 Starting Positions Instructions with Pics
  
• Modified Skin DAS Calculation Paper

Standard Operating Procedures (SOPs)

• Biopsy Collection – JDM SOP 01 Muscle Biopsy Protocol
• Blood Collection – JDM SOP 02 Blood Collection All
• Saliva Collection – JDM SOP 03 Saliva Collection All

Online Data Entry Guidance

• Guidance for the JDM Online Data Entry

JDRG Steering Committee

• Application Form – JDCBS Application
• Guidance Notes for Applicants – Guidance Notes for Applicant Researchers
• Collaboration Agreement to Sign – Collaboration Agreement
• Authorship and Publication Guidelines – Authorship and Publications Guidelines