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ObjectivesGenerating and using real-world evidence (RWE) is a pragmatic solution for evaluating health technologies. RWE is recognized by regulators, health technology assessors, clinicians, and manufacturers as a valid source of information to support their decision-making. Well-designed registries can provide RWE and become more powerful when linked with electronic health records and administrative databases in coordinated registry networks (CRNs). Our objective was to create a framework of maturity of CRNs and registries, so guiding their development and the prioritization of funding.Design, setting, and participantsWe invited 52 stakeholders from diverse backgrounds including patient advocacy groups, academic, clinical, industry and regulatory experts to participate on a Delphi survey. Of those invited, 42 participated in the survey to provide feedback on the maturity framework for CRNs and registries. An expert panel reviewed the responses to refine the framework until the target consensus of 80% was reached. Two rounds of the Delphi were distributed via Qualtrics online platform from July to August 2020 and from October to November 2020.Main outcome measuresConsensus on the maturity framework for CRNs and registries consisted of seven domains (unique device identification, efficient data collection, data quality, product life cycle approach, governance and sustainability, quality improvement, and patient-reported outcomes), each presented with five levels of maturity.ResultsOf 52 invited experts, 41 (79.9%) responded to round 1; all 41 responded to round 2; and consensus was reached for most domains. The expert panel resolved the disagreements and final consensus estimates ranged from 80.5% to 92.7% for seven domains.ConclusionsWe have developed a robust framework to assess the maturity of any CRN (or registry) to provide reliable RWE. This framework will promote harmonization of approaches to RWE generation across different disciplines and health systems. The domains and their levels may evolve over time as new solutions become available.

Objective: The Cardiology Practice Improvement Pathway was created by the American College of Cardiology (ACC) to monitor and report patterns and trends in indicators of cardiovascular practice quality in the outpatient setting with the goals of providing a tool for practice quality improvement and a framework for practice recognition programs. Methods: Eleven practices (107 cardiologists), representing a variety of practice settings and sizes, completed the pilot using four clinical outcome measures (Table). Clinical measure performance was obtained from chart review for patients aged 18 years of age or older with hypertension, coronary artery disease, heart failure, and at least two office visits during the measurement period of 1/1/09-12/31/09. Findings: Data from a total of 2560 patient records were submitted (range 36-518 per facility). Variations in performance on clinical outcome measures are displayed in the table below. Overall quality of reported care was high with half of the practices reporting over 75% of hypertensive patients with blood pressure < 140/90, 66% with LDL cholesterol < 100 mg/dl in patients with coronary disease, and over 80% of heart failure patients having the left ventricular ejection fraction assessed. However, there was wide variation in performance across the 11 practices. There as a significant (p Conclusions: This pilot suggests there is significant variation in care among outpatient cardiology practices. The feedback of these data on indicators of CV practice quality has the potential to improve performance.

• The clinical manifestations of the carcinoid syndrome have been known for 35 years. Median survival in patients with carcinoid syndrome, although dependent on several factors, including the extent of liver metastases, is in the range of four years. In this setting, a frequent cause of death is right-sided cardiac dysfunction. When this occurs, the only definitive palliation is surgical in patients with this slow-growing tumor. Successful palliation was provided by tricuspid valve replacement and pulmonary valvoplasty in a patient with carcinoid heart disease and extensive liver metastases. This emphasizes the importance of surgery in selected patients with this slow-growing tumor. (Arch Surg1987;122:1076-1077)