Patient registries are data systems organized to allows the prospective collection of clinical data to assess specific outcomes.
Types of registries include administrative, linked, and disease-, procedure- or pathology-, or product-specific registries.
Registry studies are typically considered level II or III evidence, however the advent of registry based RCTs may change this paradigm.
Strengths of registries include the volume of data available, diversity of included participants, and efficient enrollment and data collection.
Limitations of registries include variable quality of data, lack of active follow-up, and, often, a lack of detail in the data collected.
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Gliklich R.E., Leavy M.B., Dreyer N.A. (sr eds). Registries for evaluating patient outcomes: a user's guide fourth edition registries for evaluating patient outcomes: a user's guide. vol. 19(20)-–H. 2020.
- Registry-based randomized controlled trials- what are the advantages, challenges, and areas for future research?.J Clin Epidemiol. 2016; 80: 16-24https://doi.org/10.1016/j.jclinepi.2016.08.003
- NORDCAN–a Nordic tool for cancer information, planning, quality control and research.Acta Oncol. 2010; 49: 725-736https://doi.org/10.3109/02841861003782017
ICES. ICES Data n.d.
- Risk of ankle fusion or arthroplasty after operatively and nonoperatively treated ankle fractures: a matched cohort population study.J Orthop Trauma. 2020; 34
- Association between wait time and 30-day mortality in adults undergoing hip fracture surgery.JAMA. 2017; 318: 1994-2003https://doi.org/10.1001/jama.2017.17606
- Incidence and predictors of prosthetic joint infection following primary total knee arthroplasty: a 15-year population-based cohort study.J Arthroplasty. 2021; https://doi.org/10.1016/j.arth.2021.10.006
- The Australian orthopaedic association national joint replacement registry.Med J Aust. 2004; 180: S31-S34https://doi.org/10.5694/j.1326-5377.2004.tb05911.x
- The Canadian joint replacement registry-what have we learned?.Acta Orthop. 2010; 81: 119-121https://doi.org/10.3109/17453671003685467
- Highlights of the 2020 american joint replacement registry annual report.Arthroplast Today. 2021; 9: 141-142https://doi.org/10.1016/j.artd.2021.06.004
- Antibiotic-loaded bone cement in prevention of periprosthetic joint infections in primary total knee arthroplasty: a register-based multicentre randomised controlled non-inferiority trial (ALBA trial).BMJ Open. 2021; 11e041096https://doi.org/10.1136/bmjopen-2020-041096
- The randomized registry trial — the next disruptive technology in clinical research?.N Engl J Med. 2013; 369: 1579-1581https://doi.org/10.1056/NEJMp1310102
- Thrombus Aspiration in ST-Elevation myocardial infarction in Scandinavia (TASTE trial). A multicenter, prospective, randomized, controlled clinical registry trial based on the Swedish angiography and angioplasty registry (SCAAR) platform. Study design and.Am Heart J. 2010; 160: 1042-1048https://doi.org/10.1016/j.ahj.2010.08.040
- Registry-based randomized clinical trials—A new clinical trial paradigm.Nat Rev Cardiol. 2015; 12: 312-316https://doi.org/10.1038/nrcardio.2015.33
- Registry-Based Pragmatic Trials in Heart Failure: current Experience and Future Directions.Curr Heart Fail Rep. 2017; 14: 59-70https://doi.org/10.1007/s11897-017-0325-0
- Registries in orthopaedics.Orthop Traumatol Surg Res. 2015; 101: S69-S75https://doi.org/10.1016/j.otsr.2014.06.029
- Phase- and gender-specific, lifetime, and future costs of cancer: a retrospective population-based registry study.Medicine (Baltimore). 2021; 100: e26523https://doi.org/10.1097/MD.0000000000026523
- Statistical methods for the analysis of adverse event data in randomised controlled trials: a scoping review and taxonomy.BMC Med Res Methodol. 2020; 20: 288https://doi.org/10.1186/s12874-020-01167-9
- Reporting of safety results in published reports of randomized controlled trials.Arch Intern Med. 2009; 169: 1756-1761https://doi.org/10.1001/archinternmed.2009.306
- Assessing the quality of randomized controlled trials: an annotated bibliography of scales and checklists.Control Clin Trials. 1995; 16: 62-73https://doi.org/10.1016/0197-2456(94)00031-w
- Stages and Tools for Multinational Collaboration: the Perspective from the Coordinating Center of the International Consortium of Orthopaedic Registries (ICOR).JBJS. 2011; : 93
- International Orthopaedic Multicenter Study in Fracture Care: coordinating a Large-Scale Multicenter Global Prospective Cohort Study.J Orthop Trauma. 2018; 32: S58-S63https://doi.org/10.1097/BOT.0000000000001287
- A multicenter observational study on the distribution of orthopaedic fracture types across 17 low- and middle-income countries.OTA Int Open Access J Orthop Trauma. 2019; 2: e026https://doi.org/10.1097/OI9.0000000000000026
- INternational ORthopaedic MUlticentre Study (INORMUS) in Fracture Care: protocol for a Large Prospective Observational Study.J Orthop Trauma. 2015; 29: S2-S6https://doi.org/10.1097/BOT.0000000000000404
- Musculoskeletal trauma and all-cause mortality in India: a multicentre prospective cohort study.Lancet. 2015; 385 Suppl: S30https://doi.org/10.1016/S0140-6736(15)60825-X
- Delays in hospital admissions in patients with fractures across 18 low-income and middle-income countries (INORMUS): a prospective observational study.Lancet Glob Heal. 2020; 8: e711-e720https://doi.org/10.1016/S2214-109X(20)30067-X
- Ontology-based data integration between clinical and research systems.PLoS ONE. 2015; 10e0116656https://doi.org/10.1371/journal.pone.0116656
- Arthroplasty implant registries over the past five decades: development, current, and future impact.J Orthop Res. 2018; 36: 2319-2330https://doi.org/10.1002/jor.24014
- Extracting and utilizing electronic health data from Epic for research.Ann Transl Med. 2018; 6: 42https://doi.org/10.21037/atm.2018.01.13
- The impact of machine learning on patient care: a systematic review.Artif Intell Med. 2020; 103101785https://doi.org/10.1016/j.artmed.2019.101785
- Big Data and Machine Learning in Health Care.JAMA. 2018; 319: 1317-1318https://doi.org/10.1001/jama.2017.18391
- Automated machine learning: review of the state-of-the-art and opportunities for healthcare.Artif Intell Med. 2020; 104101822https://doi.org/10.1016/j.artmed.2020.101822
- How to Read Articles That Use Machine Learning: users’ Guides to the Medical Literature.JAMA. 2019; 322: 1806-1816https://doi.org/10.1001/jama.2019.16489