Research projects endorsed by TOFS

Our approach to research

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.

Research partners

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. 

Endorse & share

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.

Funding

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. 

Collaboration

TOFS is committed to its international collaboration with professional networks including EAT and ERNICA.

Find out more

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.

Engagement with researchers

TOFS - lifelong support of those unable to swallow. OA/TOF

Endorsed by TOFS

TOFS members’ participation

Partly funded by TOFS

TOAST: Anti-reflux meds trial

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.

Read more…

Lead Organisation:

NPEU National Perinatal Epidemiology Unit (part of Oxford University) (plus)

OCELOT: Core outcomes set

Aims to develop a set of desirable core long-term outcomes for OA patients. Involves 7 UK centres and 5 outside UK.

Read more…

Lead Organisation:

Alder Hey Hospital (plus)

Tailored Psychological Support Online (TaPSOn)

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.

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Lead Organisation:

University of Eastern Finland

CSOR: Surgical outcome reporting

Aims to investigate prospects of reducing unwarranted variations in outcomes for several paediatric surgical conditions, including OA. Involves 4 UK universities & 8 UK  hospitals.

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Lead Organisation:

NPEU National Perinatal Epidemiology Unit (part of Oxford University) (plus)

CARE genetic study into OA/TOF

The CARE (Congenital Anomalies Research Exploration) study is examining the genetic causes of TOF/OA. 

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Lead Organisation:

Columbia University Medical Center, New York

Role of social media in support

Survey – based study of impact of social media support on psychological wellbeing of OA/TOF Adults. Led by a UK Adult TOF.

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Lead Organisation:

University of Wolverhampton

Upper GI group (ChUGS)

TOFS seeks UK adoption or adaption of International guidelines for aftercare for OA patients.

Read more…

Lead Organisation:

BAPS British Association of Paediatric Surgeons

Charities Group

TOFS seeks UK adoption or adaption of International guidelines for aftercare for OA patients.

Read more…

Lead Organisation:

BSPGHAN British Society for Paediatric Gastroenterology Hepatology and Nutrition

TOFS & EAT

Endorsed by TOFS

TOFS members’ participation

Partly funded by TOFS

PROM - QOL

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.

Read more…

 

Lead Organisation:

GOSH Great Ormond Street Hospital / ICH Institute of Child Health (part of University College London)

Tissue-Engineered oesophagus

Ultimately aims to create a replacement oesophagus.

Read more…

Lead Organisation:

GOSH Great Ormond Street Hospital / ICH Institute of Child Health (part of University College London)

SaFE Feeding study

Aims to better understand dysphagia in OA children, to improve support & advice. Part of a PhD degree at ICH.

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Lead Organisation:

GOSH Great Ormond Street Hospital / ICH Institute of Child Health (part of University College London)

The Federation of Esophageal Atresia and Tracheo-Esophageal Fistula Support Groups

The Patient Journey

Develops statements of good practice for life-long after-care. Led by EAT, with TOFS people.

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Lead Organisation:

ERNICA European Network on Inherited and Congenital Anomalies

Consensus statements

Recommends approaches to surgery and immediate aftercare.

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Lead Organisation:

ERNICA European Network on Inherited and Congenital Anomalies

STEPS-SA Steroids & Strictures trial

Randomised trial involving at least 9 centres. Aims to establish whether steroids can help reduce formation of strictures.

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Lead Organisation:

ERNICA European Network on Inherited and Congenital Anomalies

Registries

Aims to understand existing national registries of OA children, and quality indicators used, and assess how they can be aligned.

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Lead Organisation:

ERNICA European Network on Inherited and Congenital Anomalies

Transition of Care study

A survey of paediatric surgical centres across Europe into how they manage transition for a range of congenital anomalies including OA.

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Lead Organisation:

EUPSA European Paediatric Surgeons’ Association

International OA Conferences

World’s only OA-specific multidisciplinary medical conferences. TOFS and EAT always attend.

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Lead Organisation:

INoEA International Network on Esophagheal Atresia

Transition

Identifying existing best practice in paediatric to adult transition for OA patients, & developing guidelines.

Read more…

Lead Organisation:

INoEA International Network on Esophagheal Atresia

Can You Support Our Work?

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.

Monthly

£6.00

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Monthly

£20.00

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