Patient involvement in the design of the Octopus trial and selection of treatments recognised at international conference on trials in MS

This post was authored by Susan Scott, Octopus PPI (Patient and Public Involvement) Representative, member of the Trial Management Group, and Co-Applicant on the grant that funded the trial. It was originally published in the MS Society's North Herts newsletter.

Two of us patient representatives on the Octopus trial were very honoured to fly to Toronto in December to an International Advisory Committee meeting on Clinical Trials in MS, at the invitation of Professor Jeremy Chataway (co-chair of the meeting) and Dr Emma Gray, Assistant Director of Research at the UK MS society.

The 50 or so neurologists, statisticians and rehabilitation specialists from Canada, USA, Europe and even Japan came to discuss innovative new clinical trial designs in MS, the best outcomes to measure, how to enhance the diversity of people in MS clinical trials and how to involve patients in the design, conduct and dissemination of results of MS clinical trials. 

Prof Chataway described the Octopus trial in progressive MS, due to start recruiting patients very soon now, as an example of Multi-Arm, Multi-Stage (MAMS) trials. Emma, Judy Beveridge and I talked about how patients have been involved in Octopus since the beginning helping to design the study and choose the measurement outcomes (eg including measurements of arm function and fatigue) and working with the scientists to decide a way to choose which of the thousands of drugs used to treat other conditions would be best to try in the Octopus trial.

As the only patients invited to the meeting, Judy and I were delighted to explain how the UK MS Society involves patients so well in all the research which they fund. We were thanked many times over for our input.

Octopus is a great example to the rest of the world showing how patients can help shape research which truly benefits us all.