Research

TOFS see engagement with health professionals as very important for helping to secure better health care - some examples of TOFS' engagement withcurrent research projects can be found here, with further details on how TOFS is involved in research and development here.

We help everyone born with OA and TOF and their families and carers by supporting research in four main ways.

1. We endorse Research Projects

Funding bodies often require endorsement from patient support groups. We have endorsed such projects when we believe that they will benefit our members, for example the research into the bio-engineered oesophagus (see below).

2. We circulate news about Research to our members

We are able to circulate information about studies and ask our members if they would like to get involved. Parents of children with OA/TOF and Adult TOFs have a wealth of information which is often vital to those undertaking scientific research into the TOF condition. If a researcher asks for our assistance, and if it is appropriate, we may invite you to take part in research projects by sharing your knowledge.

3. We directly fund Research

In some cases, we provide direct funding to research projects eg the TaPSon project. You can read more about TaPSon and other projects below.

4. We collaborate and network with healthcare professionals

TOFS is committed to its international collaboration with professional networks including EAT and ERNICA. For example, you can read here how a successful collaboration between TOFS and EAT benefits OA/TOF patients worldwide.

We also have strong links with the medical profession. Renowned specialists from areas such as paediatric surgery, dietetics and genetics regularly speak at our Annual Conferences. You can see videos from our 2018 Annual Conference here.

 

 

Please scroll down to see examples of our current and completed research.

Current Research Projects

The role of Facebook groups in supporting TOFs

Adult TOF Dr Jo Meredith and Dr Darren Chadwick (University of Wolverhampton) are looking at the way the use or non-use of the Facebook groups impacts upon psychological wellbeing, all TOFs/TOF parents are able to take part, whether or not they use the Facebook groups.

Transitioning from paediatric to adult care

The research aims to explore parents' and young people's experiences of moving from child to adult healthcare and it will contribute to a doctoral project in clinical psychology.

Feeding and swallowing with OA/TOF

The project aims to better define and understand the type of swallowing difficulties that children with OA/TOF have

The TaPSon (Tailored PsychologicalSupport) Project

Dr Wallace, University of Bath, is researching psychological impacts of OA/TOF on families

Treating oesophageal atresia to prevent stricture

Controlled trial to establish whether or not the routine use of antacid drugs with OA/TOF babies is helpful to them.

CARE (Congenital Anomalies Research Exploration)

Can you help Columbia University Medical Centre in New York with a new CARE research study that will examine the genetic causes of OA/TOF?

How TOFS is supporting ongoing research

TOFS supports research in four main ways: endorsing, spreading awareness, funding and collaborating. Read more about we do this here.

Transition of Care survey

The Nationwide Children’s Hospital, Ohio, in collaboration with the American Academy of Pediatrics Section on Surgery, are examining issues related to transition of care from paediatric to adult healthcare

Research project into bio-engineered oesophagus

TOFS-endorsed research project: a bio-engineered oesophagus has been successfully transferred into mice

Specialist healthcare in the home for children

This University of Oxford study looks at specialist healthcare in the home for a child or young person (e.g. feeding tube care, ventilation, injections, etc) to identify ways to improve training and support for families

Completed Research Projects

GOA (Genetics of Oesophageal Atresia) Project

The GOA Project aimed to look at the genetics of Oesophageal Atresia.

CONCORD (CoOrdiNated Care Of Rare Disease)

CONCORD aimed to investigate how the care of people with rare diseases is coordinated in the UK

Long term outcomes of oesophageal atresia

EAT (whose Board is chaired by TOFS Trustee Graham Slater) carried out this major PROM (Patient Reported Outcome Measures) survey in 2014 about long term outcomes of oesophageal atresia

Possible link between OA/TOF and 'lost twin'

TOFS invited parents of children born with OA/TOF to take part in this preliminary survey to better understand a possible link between these conditions and a ‘lost twin’

 

 

© Tracheo-Oesophageal Fistula Support
TOFS is a Registered Charity in England and Wales (327735) and a Private Company Limited By Guarantee without Share Capital, registered in England and Wales (2202260).
Registered address: TOFS, St. George’s Centre, 91 Victoria Road, Netherfield, Nottingham NG4 2NN.
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