Topic Specific Group
How can I become involved?
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 JDCBS. 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 JDCBS 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 JDCBS administrator by e-mail on info@jdrg.org.uk
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If I want to be involved, do I need to travel to London for meetings?
- No. You can be involved on many levels. There is the possibility of being involved in setting ideas for research in the following ways :
1. Being involved in face-to-face meetings if you would like. To date, patient and parent forums have taken place in London, but in the future, meetings will be offered in different regions of the UK.
2. You can be involved in TSG teleconferences if you would like. Currently, a teleconference is offered annually around the same time as the JDRG meeting.
3. Providing your e-mail contact details (or postal details if preferred) so that we may ask your opinion as a consumer.
What might I be asked to do?
- We would really like to know your views on the proposals that researchers submit. Do you think their research is important for children with JDM. You may be asked to write a letter of support (with help from us if needed) for the researcher to send to the research body when they are asking for funding.
You may wish to provide ideas of what you think is important for future research based on what you know is important for children with JDM. Any ideas are considered by the TSG and taken forward when possible. Because JDM is a rare disease, it can take time before the study is set up, completed and results are available.
You may be asked to provide an opinion on information leaflets on JDM – such as the ‘frequent questions’ currently on the website to see if they are easily understandable or if they can be improved.
If I chose to take part, do I have to join for a fixed period of time?
- Involvement in the JDM TSG is voluntary and optional. Anyone can join. If you choose to join, you can be involved for as long as you like, or leave at any time. If you are busy at any time and are not available to comment on research ideas, it is fine. You can still be part of the TSG and simply comment or join in whenever you are able to.
Office Location
Juvenile Dermatomyositis Cohort Biomarker Study & Repository (JDCBS)
UCL Great Ormond Street
Institute of Child Health
6th Floor
30 Guilford Street
London, WC1N 1EH