News

TOFS and Research

Published: Fri, 1st March 2019, 09:07:00 AM

'Behind the scenes – cooperating with researchers' by TOFS Trustee Graham Slater, reprinted from CHEW Summer 2018

 

It may surprise you but OA is a relatively high priority for medical researchers across the world. Quite frequently there are articles in medical journals and a significant number of posters and presentations on OA are routinely made at medical conferences such as the British Association of Paediatric Surgeons (BAPS) and European Paediatic Surgeons’ Association (EUPSA) Annual Congresses.  We at TOFS make a point of identifying any UK-based clinicians behind any recently-published research.

TOFS has for many years been a supporter of research into OA and there are a number of research activities with which we are currently associated.  This support takes several forms and does not necessarily require us always to make a financial commitment.  Often researchers secure funds from sources such as the National Institute for Health Research (NIHR), a body funded by the Dept. of Health and Social Care, which is the largest national clinical research funder in Europe with a budget of over £1 billion (based on 2015-16 figures).

 

TOFS gets involved in research in four ways:

1. We endorse Research Projects

What organisations like the NIHR and other funding bodies (such as foundations, universities, the EU, etc) almost always demand these days is that medical researchers can demonstrate endorsement from one or more patient organisations, and where appropriate, patient involvement in the proposed research process.  For example, we endorsed the regenerative medicine programme at Great Ormond Street Institute of Child Health (ICH), and in particular its focus on the future possibility of developing a tissue-engineered replacement oesophagus. Our patron, Professor De Coppi, has spoken about this at TOFS' conferences. 

2. We circulate news about Research to our members

TOFS also get involved in the actual research process.  Typically we provide access to a cohort of patients and parents (ie you, our members) whose medical history, condition and experiences are an inherent part of the research being undertaken. All patient details remain confidential, and TOFS does not share this information with researchers in any way, but we are able to circulate information pertaining to the study with our members. For example:

  • the Congenital Anomalies Research Exploration study (CARE) study carried out by the Columbia University Medical Centre in New York.  This is a research study that is examining the genetic causes of TOF/OA. 
  • the project examining issues related to Transition of Care from paediatric to adult health care, by Nationwide Children’s Hospital, Ohio, in collaboration with the American Academy of Pediatrics Section on Surgery.

3. We directly fund Research

In some cases, we are additionally asked to provide some direct funding and examples of current and forthcoming research programmes which fall into this category are:

  • the Tailored Psychological Support Online (TaPSon) project into the psychological impacts associated with OA, being carried out by Adult TOF and psychologist Vuokko Wallace.
  • an early feeding research project at Great Ormond Street Hospital, led by Speech and Language Therapist (SaLT), Alex Stewart.
  • core outcomes for long-gap OA patients, which is led by Ed Hannon, formerly at GOSH and now at Leeds Teaching Hospitals.
  • TOFS is also financially supporting a project investigating transition to adult care and adult care pathways, conducted by two medical students. This project, which is under the supervision of Dr Simon Eaton, Great Ormond Street Institute of Child Health (ICH), is of particular relevance to our members who are adult patients.
  • TOFS has also been approached about the possibility of involvement in and to provide financial support to a ‘Priority Setting Partnership’ project with University Hospital Southampton.  Crucially this project will seek to identify the priorities for future OA research to be funded by the NIHR. We hope that it will go ahead, with TOFS’ support.

4. We collaborate with professional networks including EAT and ERNICA

TOFS is also committed to its international collaboration with The Federation of Esophageal Atresia and Tracheo-esophageal fistula support groups (EAT) and the European Reference Network on Inherited and Congenital Anomalies (ERNICA).

EAT, whose Board is chaired by TOFS Trustee Graham Slater, carried out a major Patient Reported Outcome Measures (PROM) survey in 2014 which was analysed by researchers from GOSH and which was published in the Journal of Paediatric Surgery in April of this year. This article - whose authors consisted of the Board members of EAT together with Ed Hannon, Simon Eaton and Paolo De Coppi of GOSH - has been positively responded to by NIHR.  This will only enhance the prospect of NIHR looking favourably on future OA research proposals.

Graham, along with his EAT colleagues, is heavily involved with ERNICA.  This network has a number of research and development projects focused specifically on OA, which all have significant patient involvement, and clinical involvement from GOSH, which is the UK’s representative in this network. These projects include:

  • the development of surgical consensus guidelines.
  • care quality standards (a project involving key clinicians from four countries but which is actually being managed and led by three EAT Board members, including Graham).
  • the translation and implementation of a Quality of Life PROM methodology developed originally in Sweden.
  • the implementation of a Clinical Patient Management System (CPM) which will enable a clinician to consult with a panel of experts across Europe on complicated cases.

 

TOFS is proud to have been associated with research projects over many years and especially to all the initiatives described in this article. We could not support these activities without the efforts of our office staff and our Trustees, and of course without the support of you, our members.  

We hope to find a way of getting more TOFS people involved in these activities. There is a huge opportunity to improve things for people born with TOF/OA in the long term through more research and collaboration with healthcare professional groups. We will take the opportunity in future issues of CHEW, and via the TOFS website, to keep you informed of progress and to describe some of these programmes in more detail.

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