In 2014, two separate groups were established to enhance patient and parent involvement in JDM research:
A parent group – inviting all parents of children with JDM.
A young person’s group – for young people with JDM. This group is aimed at young people between the ages of 15-25, but in the future, groups may be available for a younger age group (11-15 years).
Members of the groups are able to determine the aims and objectives of each meeting, supported by professionals within the JDRG. The overall remit of the groups includes :
Aid researchers by commenting on research proposals and reviewing patient and parent information leaflets to ensure understandable and relevant. Researchers have attended the young person’s group in particular to get feedback on specific research studies.
Help to generate ideas for future research studies and / or help to establish research priorities in line with what is important for parents and patients.
Enable better dissemination of information on JDM, including helping to update written and web-based information.
Working with members of the JDRG to improve understanding of JDM. Each group currently meets every 4 months. Travel expenses are covered thanks to ReMission (formally PRDF). Group members do not need to attend every meeting and are welcome to participate as much or as little as they are able. If you would like to become involved or would like more information about the JDM TSG, please contact the JDRG administrator by e-mail on firstname.lastname@example.org .
If I want to be involved, do I need to travel to London for meetings?
What might I be asked to do?
If I chose to take part, do I have to join for a fixed period of time?