Anne Marie O’Dowd and Denise Dunne travelled to Barcelona on 16th October for a full and interesting day to learn about Community Advisory Boards (CAB). We were delighted that our friend and colleague from the cystinosis community in Spain, Llilli Sanz, was able to come along too.
A CAB is a formal process for people living with a condition, the people who care for them and advocates, to engage in a structured way with sponsors of research (pharmaceutical companies, research agencies or others) to ensure that the research being done meets the real needs of the group. The discussion allows people living with a condition to highlight the areas of research that are really important to them and their lives, and to build their experience into the research criteria and outcome measures. The process will also hopefully allow meaningful input from patients in the development of clinical trials and access to new treatments. The really important thing about CABs is that they recognise that it is the people living with and caring for those with a disease who are the experts.
(You can find more detailed information about CABs on the Eurordis website.)
Cystinosis Network Europe – of which Cystinosis Ireland is a member – is working to establish a CAB in our disease area, and the meeting was a really helpful event to allow us get a greater understanding of how CABs operate and how we can get the best from them. A lot of work will need to be done behind the scenes to develop the CAB, and we are hopeful that we can hold a first meeting in the first half of 2019. We will keep you updated on progress!