Study Tools

Data Collection Forms

Initial Presentation Form - Clinic Form 1
Clinic Visit Form - Clinic Form 2
Annual Visit Form - Clinic Form 3
Health Assessment Questionnaires - CHAQ-CHQA
Physiotherapy Assessment - CMAS and MMT8
Flare Form - Flare Form

Study Protocol and Corresponding Documents

Protocol - Protocol JDCBS
Child / Young Person Information Sheet - Child Young Person Information Sheet
Parent Information Sheet - Parent Information Sheet
Physician Information Sheet - Physician Information Sheet
Parent / Guardian Consent Form - Parent Guardian Consent Form
Young Person (over 16 years old) Consent Form - Over 16 Consent Form
Child (under 16 years old) Consent Form - Under 16 Consent Form
What to Collect and When - Gantt Chart
Blood Collection Form - Blood Form
Security Policy - Security Policy
Discharge Form - Discharge Form
Email Address Collection Form - Email Collection Form
Study Overview - Study Overview

Other Useful Documents

Ethnicity Definitions for New Recruits - Ethnicity Definitions for JDM Clinic
Contributing Centres in JDRG - Participating Centres in JDRG
Letter to Request Saliva - Saliva Collection Letter for Parents
GANTT Chart - Gantt Chart
JDRG Newsletter - Newsletter
MMT8 starting Positions Guide - MMT8 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