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Editorial: The value of registries – Mor Dickman

The future of registries holds 
much promise, writes Mor Dickman

Mor Dickman

Posted: Wednesday, May 1, 2019


Mor Dickman MD

In recent years, there is growing recognition that registries are a valuable tool to improve healthcare outcomes and contain rising healthcare spending. Data from registries is increasingly being used for research and to inform guidelines, especially to fill in gaps of evidence that cannot be provided by randomised controlled trials. Registries also play an important role in monitoring the safety of medicines and implants and are a valuable source of post-authorisation real-world data for regulatory decision-making.

Implementing patient-reported outcome measures (PROMs) in registries captures the missing link in defining a good outcome: quality of life issues that are the very reasons that most patients seek care. Registries also face a myriad of challenges related to the burden of data collection, technical issues, regulations – managing ethical, privacy and legal considerations, quality management, data utilisation and publications.

Isaac Newton said: “If I have seen further, it is by standing on the shoulders of giants.” In the field of clinical registries in ophthalmology, Professor Mats Lundström is the undisputed giant on whose shoulders we stand.
He established the Swedish National Cataract Registry and the European Registry of Quality Outcomes for Cataract and Refractive Surgery (EUREQUO), and is clinical director of the European Cornea and Cell Transplantation Registry (ECCTR) and the European Registry of Childhood Cataract Surgery (EuReCCa).

He developed the Catquest-9SF patient outcomes questionnaire, introduced evidence-based guidelines in cataract surgery, and initiated seminal studies on the use of prophylactic antibiotics, immediate sequential bilateral cataract surgery (ISBCS) and femtosecond laser-assisted cataract surgery (FLACS). Building on his vast experience, Dr Lundström remains a pioneer with an eye for innovation who inspires the next generation of ophthalmologists with his endless energy, optimism and scientific integrity.

The future of registries holds much promise. The randomised registry study represents a disruptive technology that has the potential to resolve the recognised limitations of current clinical trial design, using bigger data and smaller budgets. Machine learning algorithms may provide means to navigate big data available to registries and help recognise parameters, a combination resulting in optimal outcomes.
As clinical registries cover progressively more of the healthcare landscape and are supplemented by additional data from electronic healthcare records, they will provide insights into real-word practice, ultimately improving healthcare delivery and patient outcomes in the era of value-based healthcare.

Mor Dickman, University Eye Clinic, Maastricht University Medical Center