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Common questions about our research

The most common questions about how the Tuberous Sclerosis Association funds research into Tuberous Sclerosis Complex

The Tuberous Sclerosis Association (TSA) is a world-leader in funding and driving research into Tuberous Sclerosis Complex (TSC).

We receive a lot of questions about how we plan, decide upon and conduct research funding. We aim to answer all questions in a timely, transparent and worthwhile manner.

This page contains a list of common questions that we receive about our research work.

  • PhD Studentships

Our PhD studentship grants provide funding for students looking for a research career in TSC and its associated conditions.

  • Fellowship Awards

Our Fellowship Awards provide funding for researches planning to develop a track record in research into TSC and its associated conditions and seeking to transition into TSC research leadership.

  • Project Grants

Our Project Grants provide funding to support project studies in the UK planning to carry out research into TSC and its associated conditions.

More information can be found on our Research opportunities page here.

The TSA currently funds researchers from both international and UK-based institutions, including:

UK:

International:

Yes. Co-funding is part of our new five-year strategy for 2019-2023, as it allows us to maximise the potential of our own funds to further spark further funding from other likeminded organisations.

You can find out more on our Research strategy page here.

The TSA can drive TSC research only through the kind generosity of the individuals and groups who choose to donate funds to us. This includes the incredible TSC community, organisations who have made the great step of choosing to support us or other charitable grants.

We receive no government funding.

Our research strategy sets out the key areas of research we have decided we need to focus on, which can be found here. Research projects for funding are selected through peer review process, as this is recognised as best practice in awarding research grants, with each application subject to review by independent experts* in the field.

Peer review is the only way to ensure the very best research is selected for funding and that it is not duplicated by research elsewhere. Our supporters can be confident that the money they raise in good faith is spent in the most effective way, with the best chance of success to improve diagnosis and treatments of TSC.

If you’re interested in applying for funding, please feel free to contact a member of our research team for an informal conversation about our funding criteria.

*Please note that independent peer reviewers make decisions on the scientific quality of applications, not the charity’s administrative staff.

We are a member of the Association of Medical Research Charities (AMRC) and we fully support the AMRC position statement on the use of animals in research. This position statement can be found here.

TSA also supports the Home Office’s commitment to the ‘3Rs’, which serves to Refine experimental techniques and procedures, Reduce the number of animals involved in research and Replace animals in research wherever possible.

All UK research involving embryonic stem cells is strictly regulated by the Human Fertilisation and Embryology Authority (HFEA). We support the view of the AMRC that the particularly important ethical issues must be taken into account when considering funding research that involves embryonic stem cells.

We are the only charity in the UK that’s dedicated to funding research into TSC. Our TSC research spans all aspects of the condition including diagnosis, management and treatment. However, our ultimate aim remains to find a cure for TSC.

By diagnosing individuals with TSC as early as possible, we can ensure that they and their families receive the best care and support to improve their quality of life.

We hold a formal award round every two years, where we go through a rigorous decision-making process.

The application process, strategic context and terms and conditions of the award are available on our Research opportunities page here. Applicants are asked to submit the relevant documentation by email by a specified deadline.

The applications we receive are triaged internally by our research team. They check the eligibility of the applications to ensure they are in line with our research strategy, which can be read here.

External peer reviews are carried out by national and international experts, who provide written comments and score the application.

Internal peer reviews are carried out by members of our research committee (RESCOM) who also provide written comments on the application, ahead of their meeting later in the year. There is more information about RESCOM here.

It’s important that none of the external or internal peer reviewers have a conflict of interest.

Both groups of peer reviewers prepare questions for the applicants, which are collated by our research team and sent anonymously to the applicants. This is known as a rebuttal.

The applicants are given a few weeks to respond to the rebuttal.

RESCOM members then meet to discuss the applications, the written peer review comments and each applicant’s response to their rebuttal. Members then score each application and rank them. The Chair of RESCOM then makes a recommendation to our financial committee (FINCOM) and our Board of Trustees.

This process ensures we fund the most appropriate and worthwhile projects, in line with our research strategy and in the best interest of individuals living with TSC and their families.

We keep in touch with grant-holders during the period of their grant to monitor their progress and keep track of findings.

Under our terms and conditions of funding, all grant-holders must provide annual reports on the progress of their project and a final report at the end of the grant.

We send review forms to each grant-holder in November of every year. These forms are called annual reviews. Grant holders inform us of how the project is progressing and of any substantial findings or changes to the plan. These reports are read by a member of our research team.

We also send a form to projects that are near completion. These forms are called final reports. These reports are detailed and include copies of publications and other forms of dissemination, lay summaries and a longer narrative report of the research. We usually send these reports to grant-holders just before the end of the project, and these should be returned to us within three months of the end of the project. These reports are read by a member of our research team.

We work closely with researchers to produce lay summaries of each project for members of the TSC community.

During our bi-yearly award rounds, we ask potential applicants to complete and return the following documents (by a specified deadline):

  • Application form
  • Full proposal/protocol for the study
  • Bio-sketches for each person working on the project
  • Relevant ethical or other regulatory approval letters
  • Use of animals in research form (if applicable)

You can find all the information you need to apply – including the application process, strategic context and terms and conditions of the award – on our Research opportunities page here.

If you’re interested in applying for funding, please feel free to email a member of our research team for an informal conversation about our application process.

Please note that independent peer reviewers make decisions on the scientific quality of applications, not the charity’s administrative staff.

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.