Future of surgical registries

Boyle, Jonathan R.

doi:10.1093/bjs/znab176

Cited by 12 publications

(11 citation statements)

References 11 publications

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“…A registry will be defined as “an organized system that uses observational study methods to collect uniform data to evaluate specified outcomes for a population defined by a particular disease, condition or exposure, and that serves a predetermined scientific, clinical, or policy purposes” [ 3 ].…”

Section: Methodsmentioning

confidence: 99%

“…Well-designed surgical registries are essential for high-quality patient centred evaluation of implantable devices and surgical procedures [ 1 2 3 ]. The value of registries for patient benefit has been highlighted in orthopaedics with the National Joint Registry demonstrating higher than expected revision rates for metal-on-metal hip implants [ 4 ].…”

Section: Introductionmentioning

confidence: 99%

“…The US Agency for Healthcare Research and Quality (AHRQ) defines a patient registry as “an organized system that uses observational study methods to collect uniform data to evaluate specified outcomes for a population defined by a particular disease, condition or exposure, and that serves a predetermined scientific, clinical, or policy purposes” [ 3 ]. Preliminary work has suggested that there are currently over 100 registries in use in the UK that fit this definition, with around 30 of these being specific to surgery.…”

Section: Introductionmentioning

confidence: 99%

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Mapping the Landscape of Surgical Registries in the United Kingdom: A Review According to the SWiM Methodology

Moore

Avery

Young

et al. 2021

International Journal of Surgery Protocols

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Background: Well-designed surgical registries are essential for high-quality patient centred evaluation of implantable devices and surgical procedures. The importance of registries was highlighted in the recent Cumberlege report that detailed innovation failures such as the use of vaginal mesh. Many surgical registries exist, but it is currently unclear how different registries are funded, governed, designed, and how their databases are hosted and utilised. There is therefore a need to understand the variation and characteristics of existing surgical registries to identify limitations and make recommendations for improvement. This work aims to understand the characteristics and heterogeneity in the design, governance, and function of existing surgical registries in the United Kingdom (UK).Methods: Existing surgical registries will be identified using multiple data sources including surgical society websites; search engine review; a targeted search of the Medline and Embase databases and expert knowledge. The data identified will be reviewed following the synthesis without meta-analysis (SWiM) methodology. This information will be gathered from sources in the public domain only to fully understand registry transparency for professionals and the public. Details of each registry including disease area/condition/device evaluated; types of outcomes collected; governance, consent, and oversight; linkage to other datasets and funding will be extracted using a standardised data extraction tool. Characteristics of identified registries will be summarised into a narrative review.Dissemination: Findings will be presented at national and international conferences and published in peer-reviewed journals. Results will be presented to key stakeholders including surgeons, methodologists, trialists, regulators, data managers and patients to provide an up-to-date description of the current state of surgical registries in the UK. This work will inform a consensus process to agree how the design of new and existing registries can be optimised to support high quality research to benefit patients and the NHS.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Mapping the Landscape of Surgical Registries in the United Kingdom: A Review According to the SWiM Methodology

Moore

Avery

Young

et al. 2021

International Journal of Surgery Protocols

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“…In this way, registries produce "real-world evidence." 6,15 Methods of data collection and analysis that impair the accuracy of the database may be problematic in many registries 16,17 . In addition, the specific data points that registries specify and collect has only recently received attention 16,18 .…”

mentioning

confidence: 99%

A Systematic Review of Data Collection by National Joint Replacement Registries

Hoskins,

Bingham,

Vince

2023

JBJS Reviews

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Background: National joint replacement registries assist surgeons and hospitals with guiding decision making and quality of care. The data points collected are essential to interpret and analyze data and to understand confounding variables and other sources of bias, which can impair retrospective observational research. The aim of this study was to review all national joint replacement registries to assess what data points are recorded, and in what manner, for primary and revision total hip arthroplasty (THA) and total knee arthroplasty (TKA) so that improvements can be made to enhance data collection, interpretation, and analysis. Methods: All national registries were identified through Internet and publication search and contacted to invite participation. Data collection forms for both primary and revision THA and TKA were requested. Data collected were entered into an Excel spreadsheet. Results: The study group for primary and revision THA consisted of 28 national registries, with 26 agreeing to participate. The study group for primary TKA consisted of 27 national registries, with 24 agreeing to participate. Patient identification details were recorded uniformly. Only a minority recorded patient details beyond American Society of Anesthesiologists and body mass index. Most registries did not record surgeon variables: who actually performed or assisted the procedure and their level of training. There was variation in the degree of detail recorded for diagnosis, mostly regarding secondary causes of osteoarthritis and fracture. The details regarding case complexity were limited. Half recorded previous operations, and fewer recorded bone defects. The location of knee arthritis, preoperative limb alignment, and deformities were rarely recorded. Surgical approach and technological adjuncts were routinely collected, but few other details on the surgical technique were recorded. Implant details and fixation were uniformly collected, although a minority recorded specific details, including cement antibiotic or cementing technique. It was uncommon to record whether additional or adjunctive procedures were concurrently performed. Approximately half the registries lacked a revision specific form. The majority recorded reoperations in addition to revision procedures. Patient, surgeon, case, and postoperative details were recorded similar to primary procedures. There was variation in the degree of details recorded for the reasons underlying the revision +/− reoperation, with most recording greater detail for infection and fracture. Many included details on case complexity and bone defects, including the severity, classification, and how the defect was managed. The majority recorded the specific revision procedure that was performed (total or partial), the fixation used, and the components removed or revised. Other specific aspects of fixation including acetabular screws, cone or sleeve use, stems, and augments were less commonly recorded. Conclusion: Substantial data are recorded by all registries, although each one is different. Data solicited lack many patient factors, surgeon variables, case complexity, and surgical techniques. Separate revision forms are not universal, and many registries do not record reoperation procedures, specific causes of revision, and the revision construct. Level of Evidence: Level II, therapeutic study. See Instructions for Authors for a complete description of levels of evidence.

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“…In the UK, surgical registries have been developed for a variety of purposes, including assessment of surgeon and unit performance. However, assessment of device performance brings new challenges 34. Research registries such as EUROSTAR and RETA, for example, successfully identified predictors of failure of early generation aortic stent grafts with inferior outcomes 56.…”

mentioning

confidence: 99%