Table 2 Key features of the RUDY study

 Genuine partnership between patients, clinicians, researchers

 Participants, via the Patient Forum, contribute to decisions relating to all aspects of the project

 Data contributed and controlled by the participants

 Dynamic consent mechanism to enable tailored participation, and to change preferences over time

 Sub-study structure to allow selective involvement

 Innovative electronic platform design, with tailored content for different disease groups, as determined by the participants

 Allow outputs of research to be posted on participants’ secure page