A study to develop a ‘core outcome set’ of things important to you, healthcare professionals, and researchers that future studies into the condition can be measured against.
To develop an internationally agreed comprehensive core outcome set relevant to all ages from birth, childhood through transition and into adulthood. The views and experiences of a range of patients and families are a key feature of this project.
To see what symptoms have the greatest impact on the lives of those born with OA/TOF. So that these are then included in a core outcome set. Once a core outcome set for OA/TOF has been published, the hope is that all future research into OA/TOF will use these to record outcomes.
Future research studies will then be able to be compared or combined to establish which treatments are best.
See clip below for more information on core outcomes and why they are important.
Work on this study started in 2020. TOFS members have kindly taken part in workshops, questionnaires, or interviews during 2021. A list of possible outcomes will be circulated to start the process of narrowing them down. TOFS members will also be able to take part at this stage.
The study is expected to conclude during 2023.
Whilst this study is UK-led and supported by researchers at the University of Liverpool and Edge Hill University. There will be international collaboration involving every continent in the world.
The study is led by Dr Rebecca Thursfield, Consultant in Paediatric Respiratory Medicine and Associate Director of Research at Alder Hey Children’s Hospital.
TOFS has two representatives on the study’s steering group. In support of the international collaboration, there is also a steering group member from the ERNICA programme.
TOFS is a signatory to the collaboration agreement.
The study is funded largely by Alder Hey Children’s NHS Foundation Trust, with a modest contribution by TOFS.
TOFS is Patient and Public Participation partner for the trial. We have been involved since 2020, and have made numerous suggestions about patient input and facilitated international collaboration.
TOFS members took part in detailed workshop discussions (also called focus groups) which were a major input to the work.
The study will result in academic papers being published.
OCELOT was presented at the 2022 European Paediatric Surgeons Association conference. The study will also be presented in October at the INoEA Worldwide Oesophageal Atresia conference.