Early analysis of data from the British & Irish Brain Arteriovenous Malformations Registry (BIBAR)

It is important to establish a platform that allows methodical recording of treatments provided for brain arteriovenous malformations (bAVMs) which is a complex and heterogenous disease. In this preliminary report, the authors present the early analysis of the treatment of bAVMs from the British & Irish Brain AVM Registry (BIBAR).

Can a multicenter registry effectively capture bAVMs presentation and treatment data?

The British Neurovascular Group (BNVG) set up a bAVMs registry working group in November 2018, with the primary aim of trying to ascertain the number and types of treatments provided for bAVMs across the United Kingdom.

Between January 1, 2019 to December 31, 2023, treatment decisions were recorded for 1969 registered patients with bAVMs, of which 1713 patients received treatment at the time of the analysis. 56.28 % (964) patients had no evidence of rupture at the time of the initial treatment decision, whilst 43.72 % (749) presented with evidence of rupture at initial presentation. Of these, 83.31 % (624) were treated with radiosurgery, 13.62 % (102) with surgery and 0.93 % (7) underwent embolization. Age was negatively correlated with likelihood of surgical treatment. Patients who did not receive any treatment at the time of this analysis were not included.

We have shown that with a collective, collaborative effort, a national bAVM registry is feasible and as data capture becomes more complete, can provide valuable data on treatment types and volunes and provide an insight into the decision making underlying those treatments.