Patient and parent/carer representatives of the national paediatric rheumatology clinical studies group (CSG) have designed a young person- and family-friendly leaflet of clinical research studies that are currently open in the UK to children and young people with juvenile idiopathic arthritis (JIA).
We are keen to make it easier for children, young people and their families to know what research is ongoing and how to take part in such research. This leaflet will be reviewed every month by the CSG (which includes healthcare professionals, researchers, patients and parents). Updated versions will be regularly uploaded onto the Experimental Arthritis Treatment Centre for Children website at the University of Liverpool.
When you click on the following link bit.ly/2Jfk28S you’ll be taken to the JIA page. Scroll to the bottom, to find ‘List (provided by the NIHR) of research studies taking place across the UK for children and young people with JIA’.
Types of research studies included
Two types of research studies are included in the leaflet: Observational research studies and interventional research studies.
Observational research studies are where researchers look at groups of people with similar health conditions or treatments and collect information about them and their condition(s).
Interventional research studies are where people are assigned to groups that receive one or more interventions or treatments (e.g. a medicine, an exercise, an online resource), or no intervention at all. Researchers then look at the effect of the intervention or treatment on health and wellbeing.
Let others know!
Please circulate the link to the leaflet with your networks and to any other relevant people. In the event that children, young people and their families approach you as a healthcare professional about research opportunities, please engage in a discussion with them about the opportunities, and identify whether there are any appropriate studies for which they may be eligible for, and wish to participate in. If you are a young person, parent or carer, why not use the leaflet as a discussion point with your rheumatology team?
The ultimate aim of the leaflet is to make it easier for young people and families to know what’s going on within the UK in terms of paediatric rheumatology research, opening the dialogue between patients and the research community, with the vision of research becoming an integral component of paediatric rheumatology care and treatment.
Tell us what you think, and work with us to make things better
Please share any feedback you have about the relevance and helpfulness of the leaflet via the following anonymous survey: bit.ly/2vNpnvp.
We have plans to create similar leaflets for other paediatric rheumatology conditions, such as lupus, scleroderma and dermatomyositis.