Registries required: A coordinated approach facilitates novel insights

The study by Kandel et al. has provided unique insights into the complex relationship between visual acuity and quality of life. This impactful research was possible due to the effective maintenance of the multi-national webbased Save Sight Registries, with the research study including data from 44 practices, and highlighting the utility of such registries. The impacts of analyses based upon registries, including both quality evaluation and research, are significant. Through research such as that presented by the authors, insights may be gained into how best to facilitate similar registry studies in the future. We would be interested to gauge the opinions of the authors on how best to establish and maintain such registries, including perspectives that have been obtained through their involvement with the Save Sight Registries in this study. In particular, the authors' opinions on the role of government support and ways to best engage individual clinicians would be valued. Clinical registries, such as the Save Sight Registries, are vital for governments, researchers and clinicians alike. The development and maintenance of registries has been identified as a priority by governmental bodies, such as the Australian Commission on Safety and Quality in Health Care, illustrated by their provision of a register of clinical registries. Subtypes of clinical registries include clinical quality registries, which are a form of registry that includes the collection of data on the appropriateness and effectiveness of healthcare, and have an integral role in improving the quality of healthcare. Registries may also provide unique opportunities to gain novel research insights. Rare diseases, such as vitreoretinal lymphoma, provide a key example of the potential research utility of registries. The embedding of registry randomised clinical trials (RRCTs) into established registries may be a useful approach in the field of clinical research. In particular, this approach has been suggested as a means to overcome issues with external generalisability associated with the strict inclusion criteria in traditionally-designed randomised clinical trials. In view of these potential benefits of registries, additional measures should be taken to facilitate their development and maintenance. Supporting measures may be provided by governments, professional bodies, individual healthcare institutions, practitioners and patients. Governmental support through dedicated funding and grant prioritisation provides clear benefits for registries, given the potentially labour-intensive nature of such data collection. Collaborative approaches enabled through professional societies should be encouraged. The recent work on rare diseases by the Women Ophthalmologists Society in India provides an excellent example of such collaboration. Intelligent use of electronic medical records to leverage possibilities for efficient collection of data should be considered. The proactive engagement of individual clinicians with registry participation is integral to registry maintenance. Finally, patient education, either on an individual or public level, may improve awareness of registries and improve understanding of their utility and acceptability. The work by Kandel et al. highlights the type of meaningful insight that can be obtained through research performed with registries. Ongoing multilevel support, from governmental bodies through to individual clinicians, is vital to this work and should be encouraged. The views of the authors on the following question would be valued: What are the most effective means by which to engage, build, and maintain the multisite networks and support structures required for such registries? In addition, we would be interested in the insights of the authors on the embedding of trials within registries, and the types of questions that may be examined with such methodologies in future. We look forward to further work examining the optimal strategies to develop such registries, and how to use such registries to facilitate novel methodologies, such as RRCT.