Collaborative Registries Aim to Improve Care

Complying with regulatory requirements is a big motivator for surgeons and clinics to participate in post-market surveillance of drugs and devices. But detecting adverse events in the real world, comparing new products or treatments with the standard of care, and updating clinical guidelines if some patient groups benefit more than others are more substantive reasons, reports Anders Behndig MD, PhD.

Registries, such as those run by national societies and the ESCRS, are good vehicles for conducting such surveys. And more collaboration among clinicians, governments, and industry will help. “Unleashing collaboration sounds very good,” Professor Behndig said.

He pointed out that the US FDA defines post-market surveillance as “the active, systematic, scientifically valid, collection, analysis, and interpretation of data or other information about a marketed device.”

“The key words here are ‘scientifically valid,’” Prof Behndig said. “This is all about real-life data from real patients being operated in real procedures,” so consistency and accuracy of reporting are critical.

Prof Behndig’s home nation of Sweden has had a cataract registry since 1992, and many other countries have added them in subsequent years. They can collect and analyse large volumes of data to answer questions about real-world device use, typical target populations, and product performance across subgroups defined by age, gender, ethnicity, and geography.

Such data have led to important advances in patient safety, including the use of intracameral antibiotics to prevent endophthalmitis, and continuous improvement of refractive outcomes.

“We have questions like, ‘How does a particular IOL perform in very high hyperopes?’” Prof Behndig noted. “It is a very small group of patients, and an individual clinic or clinician can never answer such a question.”

But gathering data on new products or procedures from existing registries is not always possible, simply because they may not be collecting the right information, Prof Behndig said. Creating a whole new registry is possible and widely practised for post-market surveillance, but it is expensive and time consuming. “Probably the best way to go about this is partnering and collaborating with an existing registry.”

The ESCRS registries were initially funded by the EU and are now supported by the Society. The format of the EUREQUO and other ESCRS registries is now used for ESCRS clinical trials, Prof Behndig noted. “In time, we will gather good scientific data that can be useful in post-market surveillance.”

The ESCRS registries have created an industry task force to explore collaboration with academic and industry leaders. Its primary goal is to co-create a sustainable operating model for the ESCRS registries rather than pursuing purely company-specific objectives. Other goals include standardising data sets, sharing data, conducting studies, and initiating dialogue among regulators, companies, patient advocates, and registry holders.

Possible concerns include privacy and security, competition, generalisability and data quality, and cultural challenges among different organisation types. But these can be addressed, Prof Behndig said.

“The goal is a new form of collaboration beyond the public-private partnership model,” he explained. “Together, we can exchange data and use the registries to create public value.”

Prof Behndig spoke at the 2025 ESCRS Annual Congress in Copenhagen.

Anders Behndig MD, PhD is the co-chair of EUREQUO, former Head of the Swedish National Cataract Register and Swedish Ophthalmological Society, and Professor at Umeå University Hospital, Sweden. anders.behndig@umu.se