Key Dates

January 2021

Promoting our platform project page to patients

January → March 2021

Survey and patient engagement

March 2021

Follow up survey on the research ideas collected via the platform and in focus groups

23 June 2022

Focus Group on next steps for the rare cancers data registry

We are holding a focus group on Thursday 23rd June from 7.30-8.30pm to discuss ideas put forward, and how to incorporate them alongside key clinical data into the initial data set for the registry. 

Please register for the focus group here.