It's not just doctors and clinical scientists who are leading the fight to bring treatments and cures closer. We spoke to Federico Fiori (centre above), a computational data analyst working in the Santosh clinic at King's College London. Federico spoke to us earlier this year about what he is working on and what motivates him.
How did you come to be involved in Rett syndrome research?
In 2014 when I joined Professor Santosh’s team at King’s College London, the team was already interested in finding new ways to manage the many different symptom exhibited in Rett Syndrome and how this can be applied to routine clinical practice.
Professor Santosh used an innovative approach that was largely based on utilising wearable sensors to capture the physiological state of the patient to provide a more robust clinical picture. My role was to analyse the data from these sensors and see how we may exploit the analytics for improving the patient care pathway.
Being a part of Professor Santosh’s team has afforded me the opportunity to work along-side likeminded people who share my passion and drive in improving the quality of life in patients with Rett Syndrome and to disseminate this to the wider Rett community.
Imagine I am a person who did GCSE science about 20 years ago. How would you explain what you do to them?
That’s a very nice question, I think that I will start saying that technology have developed rapidly in the last 20 years. Everyone now holds a mobile phone, which functions like a microcomputer in their own hands, and most of the medical instruments are now miniaturized and wearable. It is now possible to measure and record values such as skin temperature, sweating response and activity of the heart for long periods of time whilst we go about our daily activities.
We are in an age where a large amount of information can be captured using small devices to better understand our health. What we are doing here in Professor Santosh’s team is using this information to provide better patient care and the future looks very promising.
What motivates you to do your job?
I might not be the brightest person amongst my peers, but what I do have is ‘fire in my belly.’ This motivates me to use my skills to help Professor Santosh’s team to provide the best care for patients. Knowing that patients who are coming to Professor Santosh’s clinic will feel better and their families will see a difference in their quality of life is what gives me the energy. I am motivated by the knowledge that alongside Professor Santosh’s expertise I am assisting in transforming the lives of our patients.
What are the key questions that you are trying to answer?
I am trying to answer quite complex questions but to put it simply, I am seeing how physiology captured using wearable sensors allows new treatment avenues to be opened for Rett Syndrome.
How does your work align with the work of the current clinical trial?
The current clinical trial, which we are running at the Clinical Trial Facility at King’s College Hospital, is testing a medication which might help in reducing the respiratory issues of Rett patients. My work aligns with the physiological aspects of the disorder – to see how physiology impacts on symptoms.
What would be your message for families of Rett patients?
The future is full of possibility. With enthusiastic hearts and a clear sense of purpose we have a good chance of overcoming most of the obstacles. There is nothing bigger than hope - which has increased significantly for Rett syndrome recently.
It was a little while ago, but I feel duty bound to mention the world cup
Ehm, I am Italian and sadly my team went out of the competition a little too early…I watched a couple of matches. Supporting the England team was great, but I have to admit that it is not the same ☹.