Our video sets out how young people with cancer are often excluded from research trials, without any just cause. This not only limits their individual options but holds back progress in finding better cures and kinder treatments for generations to come.
What are we doing about this and how can you help?
Unite2Cure has helped set up the ACCELERATE working group on FAIR Trials in order to Foster Age Inclusive Research . Here we are working with medical professionals, academic researchers, members of the pharmaceutical industry and those responsible for the ethics of research trials. The group is jointly led by a clinician, Nathalie Gaspar, and a parent, Chris Copland. You can find out more about the group here.
Our key proposal is for the age of entry to be reduced to 12 years in adult early phase studies (where medically justified). This may sound a bold target but there is no great obstacle in terms of law, regulation or safety. The issue, rather, is one of awareness and will within the research community. How then can we change this dogma?
WHAT WE PLAN TO DO
- Identify trials that are truly age inclusive and publicise these success stories as examples to follow
- Lobby the pharmaceutical sector, with the help of our supporters within the industry, and put the issues to the wider research community
- Engage with ethics committees at a local and national level, as well as with international networks like the European Forum for Good Clinical Practice
- Provide a researchers’ toolkit so that the procedures and paperwork for making trials inclusive become easy options
- State our case live, in the media and online
HOW YOU CAN HELP
- If you work in Pharma or Research, complete our survey on current standards: ly/FAIR2018survey
- Whether you work in Pharma, Research, Ethics or as a Patient Advocate, join our circle of supporters so that we can share expertise and experience
- Push the arguments in your own networks. Patient advocates are often consulted on the planning of research trials and these are ideal opportunities to bring the issues to the table
Do, therefore contact me at firstname.lastname@example.org
We look forward to your active support,
Chris Copland, co-chair of the FAIR Trials working group