The TSC research volunteer network encourages more conversations between researchers and the TSC community – this is called ‘Patient and Public Involvement (PPI)’. There is growing evidence proving that involving people who are directly affected by a condition in research can have a positive impact on those living the condition, researchers and clinicians.

By involving more people from the TSC community in our research priorities, the TSA can be sure that we are focusing research on what matters most to the TSC community. After all, YOU are the TSC experts here, and we believe people affected by TSC should be at the very heart of research and decision-making, at every stage of the research project.

Joining the TSC research volunteer network does not mean being an active participant in clinical trials or only answering surveys.

Patient and public involvement (PPI) ensures that people affected by TSC are at the heart of research, actively involving individuals with TSC, their families, their loved ones and carers in research that is carried out.

Rather than research being undertaken ‘for’ or ‘about’ the TSC community, research is undertaken ‘with’ or ‘by’ the TSC community.

Patient and public involvement in research is now seen by many funders as an essential part of the process of how research is identified, prioritised, designed, conducted and disseminated. This ensures that research is focused on the needs of people affected by TSC.

Many funders will now accept applications only if they clearly show how the researcher has and will involve the patient community at every stage of their research. Patient and public involvement is most definitely not a ‘tick-box exercise’.

Researchers are encouraged to get in touch with the TSA’s research team for an informal conversation about how involving the TSC community could benefit their research projects.

• Creates an opportunity to help others who are affected by TSC, now or in the future
• Increases knowledge about TSC
• Increases awareness and information about different research projects
• Direct research into areas you feel are most important

Sign up here.

• Provides fast access to a diverse group of people affected by TSC
• Ensures research is focused on the needs of people affected by TSC
• Improves patient experience, trial recruitments and retention
• Creates stronger funding applications

Contact the TSA’s research team for an informal discussion, or click here to request help from volunteers now.

• Improves the relevance and quality of research
• Makes the research carried out more impactful
• Provides evidence to secure further research investment