News

TOFS involved in another big research project!

Published: Mon, 21st December 2020, 10:04:00 AM

In 2021, the feasibility study stage of a major UK research programme – called TOAST (Treating Oesophageal Atresia to Prevent Stricture) - will get underway.  The intention is to run a “gold standard” randomised controlled trial to establish whether or not the routine use of antacid drugs with OA/TOF babies is helpful to them.  The multi-year programme is expected to involve most of the 26 UK surgical centres where OA/TOF babies are initially treated.

It is thought that around half of the UK’s OA/TOF babies are routinely given antacids.  Indeed, the 2016 North American Society For Pediatric Gastroenterology, Hepatology & Nutrition/ European society for paediatric gastroenterology, hepatology and nutrition (NASPGHAN / ESPGHAN) guidelines suggest this, but only on the basis of expert opinion, backed by a low level of evidence: this is a signal that more research would be welcome.  Research done around the World to date has been limited with no major controlled trials and it has not so far been clearly established that routine use of antacids with OA/TOF babies is beneficial.  

 

This TOAST research programme will be the biggest trial of its type in the World, and will be a major UK contribution to knowledge about how best to treat OA/TOF babies.  We anticipate that its outcomes will make it possible to strengthen or alter the ESPGHAN/NASPGHAN guidelines.

TOFS is involved in this project as “Patient and Public Involvement” partner, trying to ensure that the interest and concerns of patients are built in from the start.  

In early 2021, TOFS will be asking for members to be interviewed by the TOAST feasibility study team, as part of a consultation about the detailed design of the trial – watch this space!

For more information, please see the official project press release.

Notes: In 2016 a set of guidelines for the care of those born with OA were published, under the banner of the European Society for Paediatric Gastroenterology, Hepatology and Nutrition, jointly with the North American society of the same name.  Our international federation of OA/TOF support groups (EAT) reviewed the guidelines before publication.  TOFS has drawn members’ attention to these guidelines a number of times in Chew.  And we are asking the British body BSPGHAN what we need to do to have such guidelines formally adopted in the UK.

In a typical randomised controlled trial, a randomly-chosen half of the participants are given the medication being trialled, and the other half an identical – seeming placebo.  If the medication is effective, the outcomes for the two groups of participants are notably different.

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