Getting involved in research  – congenital heart disease

Getting involved in research – congenital heart disease


Every year over 5,000 babies in the UK
are born with congenital heart disease we define congenital heart disease as a disease of the heart that is identified before birth or present at birth imaging research has been key to advances in care and has led to more children with
heart conditions surviving into adulthood our cardiac imaging unit is a partnership between Guy’s and St Thomas’ and King’s College London it is a world leading centre
for research into cardiac imaging our unique transition service enables
our patients to have a smooth move from paediatric services at Evelina London Children’s Hospital to adult services at Guy’s and St Thomas’ and this includes being able to
continue to participate in clinical research We are a world-class centre for the delivery
of care for patients with congenital heart disease we’re able to do this through the outstanding
research facilities that we have available to deliver better care for the patients
who most need it one example of our current
research is trying to help patients born with one pumping chamber
of the heart instead of two we’re trying to study this using a unique
combination of MRI scanning and exercise we are in a unique position here in
that we are able to follow a patient’s journey really from before they’re born, by detecting
heart disease, right through to adult life by working with patients we are better able to understand the progression of disease but also the effect that it has on quality of life this also means that we can plan treatment
options and interventions more effectively to translate to better patient outcomes by working together with the
children and adult teams a patient can actually participate in research all the way
through their life as they receive treatment Aaron was diagnosed with hyperplastic left heart syndrome at birth and has been treated by our experts at Evelina London Children’s Hospital and Guy’s and St Thomas’ throughout his life he is now taking part in the Fontan Bike Study I got involved in clinical research for the fact that when I was young my parents were worried about me
and my life but by doing this I can actually
give that support to the families and the families won’t
have to worry about their little ones the team support me very well especially in my recent MRI that I had I was nervous and before I went in they
sat me down had a lovely chat with me and even during the whole procedure they were always chatting to me through the microphone and even came in double checked on me and they asked me if I had any questions after
about the whole procedure, they made time for me taking part has helped me a lot to understand
my heart condition a lot more than I used to and to help to give my family
that extra bit of support as well, when I need it and it’s made me wake up positive more
than I ever did before I started doing this research. We do cutting-edge imaging
research to help the doctors make the right decision for the timing and also the
type of surgeries for the patients patients tend to develop
symptoms when they are exercising and unfortunately a lot of the tests at present
are done without the patient exercising therefore doctors cannot see what changes
occur to them until it’s too late and the patient is at much greater risk. So one of our research projects is the Fontan Bike Study and this is to see whether exercising
could help with the diagnosis in patients patients are key partners in our research projects they inform our work which then helps guide the treatment which then overall improves the quality of life. We are continuously working to improve what
we do to remain at the forefront of medical research with the new pan London centre for imaging
research our work will continue to evolve our ambition is to enable young people
to have a better quality of life by learning more about diseases and their impact we are able to use that knowledge to improve patient care.