ABCD EndoBarrier Worldwide Registry

EndoBarrier (also known as Duodenal-Jejunal Bypass Liner (DJBL) or RESET®) is a 60cm tube-like liner made from a thin, flexible and durable impermeable polymer. It is inserted by an endoscopy and prevents food that passes through it from contacting the first two feet of small bowel intestine. In clinical trials it leads to weight loss and improved glycaemic control and may become a useful treatment option in the future.

ABCD and EndoBarrier

ABCD funded the REVISE-Diabesity (ISRCTN00151053) and End-OSA EndoBarrier studies (ISRCTN33788132), which are supported by the NHS, as National Institute for Health Research’ (NIHR) Clinical (Diabetes) Research Network Portfolio Studies.  The results from the REVISE study were presented at the WCIT2D congress in 2019, and the study, as news of the outcomes emerged, sparked a BBC news item on the subject. There was also a BBC news item following the launch of the End-OSA study of EndoBarrier in diabetes with obstructive sleep apnoea.  The results of that study were presented at ADA 2020 and EASD 2020.

Need for a registry

Over 3000 patients in the world have had EndoBarrier treatment. Those of us who have used it have found that most patients gain considerable improvement in terms of reduction in weight, improvement in diabetes control, improvement in cardiovascular risk, reduction in the need for other diabetes medications, in particular insulin and improvement in patient wellbeing.  Furthermore, the improvement seems to be sustained three years after removal of EndoBarrier.  Examples from the experience in Birmingham, UK, are readily available to view. Side effects, such as they are, seem to be acceptable considering the benefit. If the information about all these patients could be collected into a single worldwide registry, we would have enormous power to demonstrate the benefits of EndoBarrier in relation to the risks. Using the technology already established for the ABCD nationwide and worldwide audits, ABCD has created an independent online tool to collect this data.  

Local analysis

The tool facilitates Centres entering data to analyse their own data very easily for the purposes of presentation and publication, etc.

National registries

The German national registry data was presented at the EASD in 2016. We introduce here the independent worldwide EndoBarrier registry tool which now allows other nations to easily follow suit and analyse their own national data for the purposes of presentation and publication, etc: The tool very easily allows all the Centres in a Country to combine their data.

Worldwide registry

The tool easily then allows worldwide analysis of all the data in the world and it allows for comparison between countries

Ownership of the data

As well established for the other ABCD national and worldwide audits of new diabetes therapies, the data is jointly owned by all those contributing to the registry and all contributors will be mentioned in all publications utilising the worldwide data. On the safety side the tool will allow us to know the exact frequency of adverse events and the circumstances in which they occur

Registration

All EndoBarrier using Centres are therefore encouraged to register and enter the data from their EndoBarrier treated patients. Data can be added retrospectively or prospectively. Click here to register and join the registry.

Paper forms

If you would like to collect data on paper forms that exactly match the on-line tool then you can download for printing the first visit form and the follow up visit form