info for researchers

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 REDCap Data Collection Forms

• Please use these Forms for Clinic from now on. Do not use the old Forms (1, 2, 3, Discharge and Flare forms).

• What form should I use?

• Form A – Demographic and Diagnostic Information 
• Form B – Disease Activity and Medication
• Form C – Damage Items
• Discharge Form
  
• Flare Form

• Health Assessment Questionnaires
• Physiotherapy Assessment –  CMAS and MMT8
• REDCap Tutorials & Guides

Study Protocol and Corresponding Documents

• Protocol JDCBS
• Patient (Under 8/8-12/12-16/Over 16) & 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

MSA

• PReS: JDM Working Party
• Powerpoint Video Presentation on MSA
• Quick reference guide to interpretation of Myositis Specific Antibodies for healthcare professionals

Other Useful Documents

• Ethnicity Definitions for New JDM Clinic Recruits
  
• Participating Centres in JDRG
  
• Saliva Collection Request Letter for Parents
• Latest JDCBS Newsletter – July 2022
  
• 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

• For more information on how to apply for data/samples, and the most recent version of the application forms, click here.

MMT8 Assessment

CMAS Assessment