SHARE JDM survey
Date: 28.07.2022
The CARRA JDM Disease Committee, with IMACS, would be very grateful if you could complete an important, voluntary IRB-approved survey to help us determine the worldwide applicability of the consensus guidelines for JDM for assessment and treatment (SHARE Guidelines https://ard.bmj.com/content/76/2/329). Please respond by August 30, 2022.
The survey will take 15-20 minutes to complete.
Please follow the link: https://redcap.link/JDMShare
See below for more details. Please let us know if you have any questions or concerns.
Many thanks,
Liza McCann & Susan Kim on behalf of the SHAREIMACS SIG.
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Additional details:
BACKGROUND: The European Initiative, called Single Hub and Access point for pediatric Rheumatology in Europe (SHARE), developed recommendations to optimize and disseminate diagnostic and management regimens in Europe, for several conditions, including juvenile dermatomyositis (JDM). The aim of the SHARE recommendations was to develop ‘best practice’ guidelines or minimum ‘standard of care’ throughout Europe. The JDM SHARE guideline includes 7 overarching principles, 33 recommendations on diagnosis and 19 on therapy (59 items). (https://ard.bmj.com/content/76/2/329; Link to publication).
The IMACS SHARE SIG was formed to review and augment the JDM SHARE recommendations and develop ‘best practices’ for JDM that could be applied internationally.
We would like you to complete this survey so that we can obtain the following information:
- Determine the worldwide applicability of the SHARE guidelines.
- Determine if there are regional differences in access to investigations or treatments.
- Determine respondents’ view of items in the SHARE guideline (agree / disagree). To do this, the survey is intentionally listed largely verbatim as in the manuscript.
- Determine which aspects of the SHARE guidelines respondents agree or disagree with to help inform decisions on what needs updating in the future.
- Capture limited demographic information to understand the countries/regions in which the respondents are caring for patients with JDM.
Thank you for taking the time to consider this important survey!
Liza McCann and Susan Kim
