Following the successful public launch of the CLUSTER Consortium, we were delighted to present the launch of the CLUSTER Consortium Patient and Parent Network (PPN) on June 22nd 2019.
CLUSTER has five working project groups set up to achieve its goals, one of which is focused on the CLUSTER patient and parent network, to ensure children, young people, and their families are involved with the research process over the five years.
On 22nd June over 40 guests including researchers, charity representatives, JIA network representatives, patients, parents and members of the public attended the launch at Great Ormond Street Hospital, Weston House in London. The aim of the day was to launch the concept of the CLUSTER Consortium Patient and Parent Network (PPN) and present the first draft of the CLUSTER Consortium website.
We were lucky enough to have representation from, CCAA, JIA-Matters, SNAC, NRAS, Versus Arthritis, JAR Project, Radio Lollipop, The Teapot Trust University College London, and Manchester University with participants ranging across all ages and experience. Sessions were split to allow our younger audiences to express their views and feedback in a friendly environment.
The second session introduced the network and the CLUSTER Consortium Champions (CCC) concept. The knowledgeable, varied and interactive groups provided excellent feedback on how the network would involve and engage members of the public, charities and networks across the four nations. We also received very enthusiastic feedback on the roles of the Champions, their interaction and responsibilities within the network and the application process.
Alongside this, we were excited about our engaging Strawberry DNA Extraction workshop run by UCL Senior Research Associate Dr Claire Deakin. This gave the opportunity for younger attendees to enjoy some fun science, and provided them with an explanation of the type of research and laboratory work that CLUSTER engages in. The feedback showed this was a highlight of the day.
Alongside the workshops, art therapy sessions were conducted by the experienced Teapot Trust, coordinated by Gillian Datlen. The younger members produced great work around importance of research, how to get involved and had fun producing a fun mascot for CLUSTER. We would also like to extend a special thank you to the wonderful volunteers from Radio Lollipop, whose experiences on the day helped the smooth running of the workshops and aiding in the art therapy.
From the feedback on the day, we are now developing a concept and application process for those interesting in becoming a CLUSTER Consortium Champion.