The recent outbreak of Coronavirus (COVID-19) has been such a difficult time for families of people with Rett Syndrome and will no doubt continue to challenge us in the weeks and months ahead.
In Q3 2019, subject to a lengthy and rigorous AMRC governed peer review process, the Board of Trustees of Reverse Rett committed funding of £998,000 over three years to the newly developed ‘Centre for Personalised Medicine in Rett Syndrome (CPMRS)’ based at King’s College Hospital.
This new Centre has a special focus on assessing, treating and providing holistic care to people with Rett Syndrome of all ages who present with complex health issues.
The team at the CPMRS is led by Professor Paramala Santosh who established the first UK clinical trial for Rett Syndrome at King’s in 2017. Professor Santosh is a world renowned expert in managing emotional, behavioural and autonomic dysregulation in children and adults with rare diseases and has a special interest and expertise in managing those patients deemed to be at greatest risk.
As well as treating individual patients, the CPMRS focuses on providing holistic specialist care, implementing clinical trials, developing digital health strategies to monitor and manage patients, whilst conducting research.
Reverse Rett Executive Director, Rachael Stevenson says:
‘There has never been a more important time for us to be able to lean into the expertise of a specialised UK based clinical research centre specifically focused on the needs of complex patients with Rett Syndrome of all ages.
This work is vital in order to develop best practise for managing patients with Rett, not only in the current crisis, but throughout the trajectory of this unrelenting disease, which puts affected patients at increased risk of so many other problems which do not typically compromise the general population.
Through their work, the CPMRS team will generate and share wider learning about the condition, in particular, how to keep people with Rett Syndrome alive and well, until better treatments and ultimately a cure can be delivered.
We applaud Prof Santosh for all his efforts over the last several years, to bring his work with people with Rett Syndrome to the fore, and look forward to working closely with the whole team as this work comes to fruition‘.
Professor Santosh says:
‘We are excited to be working alongside Reverse Rett and I believe that together the CPMRS’s unique combined clinical and research focus will help provide state of the art holistic care and improve outcomes in the here and now, whilst pioneering research into treatments for Rett Syndrome.’