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TSCampaign TSCampaign
TSA Research -
Landmark decision as everolimus for Did you know? Some of the things happening
in TSC Research, led by the TS A…..
refractory epilepsy in people with

TSC is accepted for use in Scotland The 2018 Award Round ran

during last year. We received Our current research
portfolio includes 15live
9applications and funded
As the everolimus debate continues for TSC patients, 3new projects. and ongoing research
projects.
the TSA is making sure your voices are being heard

We are delighted to tell you that the Scottish Medicines Consortium
(SMC) announced on Monday June 11 that everolimus will be available
on prescription to treat TSC related refractory epilepsy in people aged In 2017, our funded work We are shortly to publish our
two years and older with Tuberous Sclerosis Complex (TSC) in Scotland. was profiled at a number refreshed Research Strategy.
of conferences and
Our CEO Maxine Smeaton said: “We are absolutely delighted with this announcement. This meetings. There were 17 This will outline our key
decision will have a tremendous impact on the physical and mental health of people living with TSC-related refractory priorities for research and
epilepsy in Scotland, as well as improving the quality of life for their families and carers.” oral presentations and detail how we deliver these
8academic posters.
Maxine added: “We are grateful to SMC for providing the TSA with the opportunity to speak over the next 5years.
directly to the decision-making panel along with our patient representative, Craig Ireland. His
first hand experience was key to helping the SMC make an informed decision about the
benefits of taking everolimus for TSC related refactory epilepsy.” Father-of-one Craig, from We are increasingour
Falkirk, represented Scotland’s TSC community at an SMC hearing in Glasgow last month. numbers of both lay and We are funding two
professional members on
Dr Chris Kingswood, TSA Trustee stated: “This is fantastic news and a game-changing our Research Committee members of the UK TSC
landmark in the treatment of TSC. The TSA will now develop a plan to support the NHS to (RESCOM). Community to attend the
Craig Ireland 2018 TS Alliance World
ensure all patients who need everolimus, have access and can be safely monitored.”
Dr Kingswood is a consultant nephrologist who chairs the TSC’s research committee. Jill Booth, Area Drug and Conference.
Therapeutics Committees Clinical Adviser for the Scottish Medicines Consortium, said: “We would like to thank the TSA In 2017 our funded work
for the time and effort taken to produce your submission and also for your participation in the PACE (Patient and clinical led to the publication of 9
engagement) process. Capturing the views and experiences of patients and carers is an important part of the SMC papers in academic
process and plays a key role in helping our committee reach its decisions. We hope that your patient group will journals with more to come
welcome this decision.” The TSA is also contributing to work underway by NHS England in a bid to secure everolimus in 2018
available on prescription for people with TSC related refractory epilepsy in England. A decision by NHS England’s Clinical Through your support
Priorities Advisory Group (CPAG) is expected in the next few weeks. “We are looking forward to what we hope will be a we will have contributed
similarly positive decision about everolimus by NHS England,” said Maxine Smeaton. We are looking at new £2.4 millionto TSC
waysto use patient data by research between
2011-2020.
reviewing clinical registries
How does the CPAG work? and other technologies.

The CPAG makes recommendations on NHS England’s approach to commissioning
services, treatments and technologies, and considers which of these should be
prioritised for investment. Its scope includes all specialised services provided by NHS TSA Research contacts
England. The advisory group assesses drugs, medical devices and treatments
according to their clinical effectiveness, benefit for patients and value for money.
It considers recommendations from clinical reference groups (CRGs) Head of Research Research Grants and Evidence Assistant
and teams covering NHS England’s specialised commissioning Alison Cooper Bethan Vaughan
James Palmer, Medical Director for
responsibilities and takes into account detailed information
Specialised Services, NHS England Tel: 01256 895 183 Tel: 020 7922 7731
about the financial impact.
alison.cooper@tuberous-sclerosis.org bethan.vaughan@tuberous-sclerosis.org
To find out more about the CPAG process watch this video youtu.be/b1exxrBDUEU

18 Summer 2018 TSA SCAN 19