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TSC research volunteer network

How to be involved in Tuberous Sclerosis Complex research, regardless of your background or experience

You don’t have to be an academic to be involved in Tuberous Sclerosis Complex (TSC) research.

By joining the TSC research volunteer network, you can have an important voice in the sort of research that the Tuberous Sclerosis Association (TSA) prioritises and funds.

Some of the ways the TSC community can be involved in research include:

  • Identifying and prioritising research questions
  • Suggesting ideas for research projects
  • Reviewing funding applications for research
  • Reviewing information produced for leaflets or webpages
  • Presenting and promoting TSC research at conferences and events

What is the TSC research volunteer network?

The TSC research volunteer network aims to encourage conversations between researchers and the TSC community. This happens by making it easier to be involved in research, thereby raising awareness of patient and public involvement amongst TSC researchers.

Volunteers who join the TSC research volunteer network regularly experience the impact of TSC. You could be a person living with TSC, a loved one or carer of a person living with TSC, or a TSC researcher or clinician.

By involving more people from the TSC community in our research priorities, the TSA can focus research on what matters most to the TSC community.

What is patient and public involvement in research and why is it important?

Patient and public involvement (PPI) ensures that community members are at the heart of research, actively involving the community in research that is carried out – rather than research being undertaken ‘for’ or ‘about’ the community, research is undertaken ‘with’ or ‘by’ the 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. 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. However, patient and public involvement is most definitely not a’box-ticking exercise’.

There is growing evidence suggesting that involving people who are living with or affected by a condition in research has a positive impact for community members, researchers and clinicians

Patient and public involvement does not mean being involved in clinical trial or just answering questions in a survey that has already taken place.

Sign up to the TSC research volunteer network

What happens once I’ve signed up?

Your details will be added to the TSC research volunteer network mailing list. You’ll receive regular emails with updates on TSC research involvement opportunities, and information on any focus or steering groups in your area.

Any questions?

If you’d like to know more about the TSC research volunteer network and how you can be involved, contact the TSA’s research team, or call the TSA’s main switchboard on 0300 222 5737.

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Make a one off or regular  donation

£10 Means that we can send a support pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.

£25 Can help us develop materials that are included in our support services, flagship events or campaigns.

£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.

To provide help for today and a cure for tomorrow.