We support research projects into all areas of OA/TOF to help us achieve our goal of anyone born with OA/TOF living life unlimited.
In addition to our support of projects in the UK, we are involved internationally through our membership of EAT (the international federation of OA patient support groups). In 2021 TOFS established a sub-group of clinicians to help manage our engagement with research studies and new initiatives.
Our support covers research into a wide range of topics, including tissue engineering, medication trials, psychological and quality of life issues, the use of social media in providing information, pastoral support and experience sharing, the impact of COVID-19, feeding and nutrition, aftercare/follow-up and transition, and the development of key outcomes.
TOFS is currently engaged as a full ‘Patient and Public Involvement’ research partner with a major randomised controlled trial (Treating Oesophageal Atresia to prevent Stricture, known as ‘TOAST’) to investigate whether or not the general use of antacid medicines with all OA babies would be helpful. We believe this is the world’s largest randomised controlled trial involving babies born with OA. Our role is to try and ensure than the interests and concerns of patients are built in from the start.
There is increasing recognition of the patient “voice” and perspective in research studies. In some instances, the support offered by TOFS is purely by endorsement of its relevance to OA patients. On other occasions, a research activity has increased involvement and/or active collaboration with TOFS. We are consulted on surveys and questionnaire content; through our family members we are able to provide study subjects; we can provide a “patient voice” and perspective throughout the project or study, including contributing to project reviews.
Where appropriate and if required – we can provide modest funding contribution for studies that will ultimately improve the lives of those born with OA/TOF.
Support for researchers
Have you an idea for researching an aspect of the OA/TOF condition? Request patient input or get in touch.
Patients – get involved in research
Born with OA/TOF or the parents of a child born with OA TOF and like to join our database of individuals interested in taking part in research projects? Let us know here.
Please also see our library of open-access published research papers into OA/TOF.
Endorsed by TOFS
TOFS members’ participation
Partly funded by TOFS
UK-wide randomised trial. Aims to establish whether universal use of PPI drugs lessens strictures in OA babies. Involves Evelina Hospital, Univs of Southampton, Liverpool & Nottingham.
Lead organisation:
NPEU National Perinatal Epidemiology Unit (part of Oxford University) (plus)
Aims to develop a set of desirable core long-term outcomes for OA patients. Involves 7 UK centres and 5 outside UK.
Lead organisation:
Alder Hey Hospital (plus)
Aims to increase the understanding of psychological impact of OA on families, and to create support tools for OA families. Part of a PhD, led by a UK Adult OA/TOF.
Lead organisation:
University of Eastern Finland
Aims to investigate prospects of reducing unwarranted variations in outcomes for several paediatric surgical conditions, including OA. Involves 4 UK universities & 8 UK hospitals.
Lead organisation:
NPEU National Perinatal Epidemiology Unit (part of Oxford University) (plus)
The CARE (Congenital Anomalies Research Exploration) study is examining the genetic causes of TOF/OA.
Lead organisation:
Columbia University Medical Center, New York
Survey – based study of impact of social media support on psychological wellbeing of OA/TOF Adults. Led by a UK Adult born with OA/TOF.
Lead organisation:
University of Wolverhampton
TOFS seeks UK adoption or adaption of International guidelines for aftercare for OA patients.
Lead organisation:
BAPS British Association of Paediatric Surgeons
TOFS seeks UK adoption or adaption of International guidelines for aftercare for OA patients.
Lead organisation:
BSPGHAN British Society for Paediatric Gastroenterology Hepatology and Nutrition
TOFS invited parents who have had children born with OA/TOF to take part in this very short preliminary survey to better understand the possible link between these conditions and a ‘lost twin’.
Lead researcher:
Mr Charles Shaw-Smith, Consultant Clinical Geneticist
Endorsed by TOFS
TOFS members’ participation
Partly funded by TOFS
Methodology for Patient-Reported Outcomes Measures Quality of Life studies (Childrens’ Hospital Gothenburg /EAT) being validated via GOSH/ICH with TOFS members for UK use.
Lead organisation:
GOSH Great Ormond Street Hospital / ICH Institute of Child Health (part of University College London)
Ultimately aims to create a replacement oesophagus.
Lead organisation:
GOSH Great Ormond Street Hospital / ICH Institute of Child Health (part of University College London)
Aims to better understand dysphagia in OA children, to improve support & advice. Part of a PhD degree at ICH.
Lead organisation:
GOSH Great Ormond Street Hospital / ICH Institute of Child Health (part of University College London)
Develops statements of good practice for life-long after-care. Led by EAT, with TOFS people.
Lead organisation:
ERNICA European Network on Inherited and Congenital Anomalies
Recommends approaches to surgery and immediate aftercare.
Lead organisation:
ERNICA European Network on Inherited and Congenital Anomalies
Randomised trial involving at least 9 centres. Aims to establish whether steroids can help reduce formation of strictures.
Lead organisation:
ERNICA European Network on Inherited and Congenital Anomalies
Aims to understand existing national registries of OA children, and quality indicators used, and assess how they can be aligned.
Lead organisation:
ERNICA European Network on Inherited and Congenital Anomalies
A survey of paediatric surgical centres across Europe into how they manage transition for a range of congenital anomalies including OA.
Lead organisation:
EUPSA European Paediatric Surgeons’ Association
World’s only OA-specific multidisciplinary medical conferences. TOFS and EAT always attend.
Lead organisation:
INoEA International Network on Esophagheal Atresia
Identifying existing best practice in paediatric to adult transition for OA patients, & developing guidelines.
Lead organisation:
INoEA International Network on Esophagheal Atresia
TOFS receives no Government support and relies completely on donations from our supporters.
Regular donations are extremely important to TOFS. By choosing to give a regular monthly donation, you will help us to plan ahead and make long-term improvements for people with OA/TOF and associated conditions all over the world.
