Speaking to Venous News at this year’s European Society for Vascular Surgery (ESVS) annual meeting (23–26 September, Istanbul, Türkiye), European Venous Registry (EVeR) secretary Baris Ozdemir (North Bristol NHS Trust, Bristol, UK) reflects on the year since the launch of the registry’s pilot phase in September 2024.
Developed and hosted by the ESVS, EVeR is designed to illuminate the real-world outcomes of deep venous intervention over a 10-year timeframe and is set to be an international repository of deep venous treatment data.
“We have treatments that seem to work very well, but also some uncertainties about who they should and shouldn’t be applied to,” Ozdemir shares, outlining the rationale behind the registry. EVeR is the culmination of several discussions amongst a group of stakeholders who are “interested in addressing the same questions,” he continues—including physicians, industry, and patients.
With the registry now in full swing, Ozdemir reflects that “things are going well”. “Going live was a big deal,” he says, specifying that the main aim of the registry thus far has been “working out the finer details” with regard to recruitment and data analysis.
Ozdemir details that, to date, 114 centres have shown interest in the registry. Of those, he notes, over 40 have received clinical approval and over 30 are now actively recruiting patients. “We’ve recruited over 60 patients,” he says, “which—for a deep venous registry—is already a lot of patients.” Ozdemir is confident about the future too. “We hope that if we keep this pace up, we’re going to grow fast.”
Homing in on his experience recruiting to the registry, Ozdemir reflects that it was “very difficult” getting the first patient involved. “But now it actually seems like not a big deal, it’s easy. You kind of get familiar with the software.”
Looking ahead, Ozdemir shares that the registry recruitment software is set to be updated to make it “more user-friendly” and to allow centres to “gather more data, faster”. He adds that the registry team is currently working on an annual report to outline progress thus far.
Despite the overall “good progress” being made, Ozdemir also reflects on some setbacks. “It’s been challenging because we have to pass different ethical criteria in every country that we recruit to,” he shares, noting that the team has had “great support” from the ESVS to help navigate this obstacle.
Ozdemir adds that the team has had to “tweak” the registry to match projects that are running in parallel. “In addition to EVeR, we have published a core outcome set for deep venous disease and we are about to submit a core descriptive set for the same group of patients” he explains, noting that the idea is for the data collected in EVeR to then be “mergeable” and fit to be analysed with other registries and randomised trials.
At this juncture, Ozdemir is keen to reiterate the importance of the registry and of recruiting patients to it. “Essentially, this is an area where we have relatively novel treatments that have been shown to work in case series, both in acute and chronic patients, but there are still question marks in the wider vascular community about who derives benefits from these interventions and frankly there aren’t any long-term data in a real-world setting,” he says. “We have long-term data from certain centres of excellence from a few parts of the world but not in the real-world setting, and we hope over the next decade we’re going to acquire that real-world data.”
Ozdemir points out that an important element of the registry is that it is recruiting not only patients who are undergoing intervention, but also those who are not. “This will allow us to compare what happens to the patients in these two groups,” he explains. “It’s not just a procedural registry, we want it to be a patient registry that includes those who choose to and those who choose not to have an intervention.”
Ozdemir also stresses that venous disease affects a particularly young population, with EVeR set to answer questions for a cohort of patients who will live to see the effects of an intervention—or lack thereof—for many years to come. “As physicians, we don’t understand the burden of disease. It’s almost like we just see a young patient who seems okay and we say, ‘are you sure you want to have a stent?’ But actually, for them it can be positively life changing. On the flip side of that there’s a lot of patients with extensive DVT [deep vein thrombosis] who never get problems, and we’re hoping the registry will help us to start working out who’s going to fall into which group.”
