New Sub-Registries Promise a Data-Rich Ecosystem for Chronic Disease Research
Written by: Kirk Livingston and Nicole Darden, Registry Product Manager, Veradigm
Patient registries play a critical role in the health care system. A patient registry is a collection of data— systematically assembled over time—about people who share a certain disease or condition. For many years, patient registries have proven helpful in reducing healthcare costs, improving health outcomes, and improving quality of care.1
The growing use of electronic health records (EHR) has made data collection a much simpler task compared to the days of paper records. Capturing data electronically is easier, and so is analyzing that data. Automated data collection, centralized storage, real-time updates, and newer data analysis tools and approaches have all contributed to an increasing use of and focus on health registries.
Veradigm has partnered with the American College of Cardiology (ACC) to operate two registries that track two large and growing patient populations. Now, Veradigm is expanding the use and availability of registry data by adding a set of sub-registries to the existing registries.
In this blog, we’ll explore how patients impacted by cardiovascular disease and metabolic disease will benefit from these expanded registry data sets. Veradigm’s involvement in these sub-registries is critical because EHR records will help fill out the data sets with a wide range of data that had not previously been available. Weaving full patient histories into a patient registry promises a broader and deeper set of details that will help highlight healthcare trends and care opportunities when used with today’s analytical tools and methods.
Sophisticated Data to Combat Prevalent Diseases
Cardiovascular disease and metabolic disease are both prevalent conditions that result in significant comorbidities for patients along with increased costs for patients and health systems. Both diseases have been in the public eye for some time.
Cardiovascular Disease Registry
Cardiovascular disease is the leading cause of death worldwide, taking the lives of 18 million people each year.2 The global cardiovascular drug market size is around $55.32 B in 2022 and is projected to reach $78.791 B in 2030.3Collecting increasing amounts of data into registries, along with different types of data, can only help understand and treat the large number of patients involved.
The Veradigm Cardiology Registry, operated in association with the ACC, represents the largest sample of ambulatory cardiology practices in the U.S. and already provides important insights into current care delivery.4
In 2017, the registry included information on more than 6 million patients and more than 8800 providers in 724 practices.5 In 2023, the registry had 102 million patient records representing more than 19.9 million unique patients.6
Diabetes and Other Metabolic Disease Registries
Diabetes, which is an outcome of metabolic syndrome, is one of the leading causes of death and disability globally, with over 500 million individuals living with diabetes.7 Diabetes is also a significant factor in healthcare spending worldwide. Studies estimate the “global direct health expenditure on diabetes in 2019 is USD 760 billion and is expected to grow to a projected $825 B by 2030 and $845 B by 2045.”8
The Veradigm Metabolic Registry is the first clinical ambulatory registry to track and improve the quality of diabetes and cardiometabolic care across the primary and specialty care continuum. The registry contains more than 79 million records, corresponding to more than 13.5 million patient lives, 11,000 providers, and 3400 office locations.9
Holistic Registry Data Can Help
Launching registry subgroups increases focus on details that have not been available for analysis in the past. New laboratory tests become important in clinical practice over time. For instance, Lipoprotein (a) is an increasingly important predictor (along with C-reactive protein, CRP) of major adverse cardiovascular events. Registries capturing these results will contribute to the growing wealth of data.10
Veradigm Sub-Registries Will Change How We Look at Disease
New Sub-Registries
The new Veradigm sub-registries will pull in a range of data that will allow for the analysis of real-world data (RWD) and real-world evidence (RWE) (Table 1). Clinical data plus real-world data from past medical records and medication histories, for example, will open new windows into possible causes and treatments.
Table 1. Veradigm Sub Registries.
| New Veradigm Sub-Registries | Collecting Data Types over Time1 | |
|---|---|---|
| Cardiology | Veradigm Heart Failure Registry, Veradigm Atherosclerotic Cardiovascular Disease (ASCVD) Registry, Veradigm Atrial Fibrillation Registry, Veradigm Hypertension Registry, Veradigm Hypertrophic Cardiomyopathy Registry | Demographics, Plan of care, Cardiac events and comorbidities, Exams, Procedures, Lab values, Related medications |
| Metabolic Disease | Veradigm Type 1 Diabetes Registry, Veradigm Type 2 Diabetes Registry, Veradigm Chronic Kidney Disease Registry | Patient demographics, A1c control, Nephropathy, Blood cholesterol, Hypertension eye exam, Foot exam, Antiplatelet therapy. |
Registry Personal Data Remains Private
The use of electronic health records to expand the available research data has built-in protections to ensure that personally identifiable information (PII) is never available. Clinical researchers are trained in the use of PII, and the use of data falls under the authority of an institutional review board (IRB), which reviews uses to provide ethics approval. In addition, various strategies are used to ensure anonymity, like aggregating data, data encryption, de-identifying personal identifiers, and using unique identifiers.
What Can We Learn from Detailed Sub-registries?
The new Veradigm disease-specific sub-registries are uniquely positioned to provide rich clinical data on patients with cardiovascular disease through our provider community and the relationship with ACC. The registries develop access to RWD and RWE through a longitudinal view of the presentation, progression, management, and outcomes of patients as they receive care from multidisciplinary care teams.
This expanded data will help expose the patterns of symptoms, illnesses, and treatment in patients with the disease, along with identifying preexisting conditions, family and medical histories, and psychosocial factors that may be present.
This expanded data will help researchers better understand current therapies in the marketplace for cardiovascular patients and how to achieve better outcomes and improve overall performance. The data will also be used to evaluate risk factors for cardiovascular and metabolic diseases in important patient subgroups, develop prediction models for daily care, and improve the quality of patient care. The bottom line is that these new sub-registries will promote better, more thoughtful, and cost-effective care. Care that translates to improving patients’ daily physical, psychological, and social well-being.
To see how you can grow your clinical insight by participating in the Veradigm cardiovascular disease and metabolic disease registries and their new sub-registries, contact Veradigm today.
References:
- Posadas-Martinez ML, Vicens J, Dawidowski AR, et al. The role of registries in improving health and bridging healthcare, research, education, innovation and development: a research department perspective. Journal of International Medical Research. 2024;52(3). doi:10.1177/03000605241233140
- Somberg J. The Importance of Cardiology Research. Cardiol Res. 2020;11(6):355. doi:10.14740/cr1173
- Insights10. Global Cardiovascular Drugs Market Analysis Report 2022 to 2030. www.insights10.com. Accessed March 13, 2024.
- PINNACLE Registry Study Shows Improvements in Ambulatory CV Care Processes. American College of Cardiology. Accessed March 15, 2024.
- Ibid.
- EHRIntelligence. Veradigm, HealthVerity uses registry data for chronic disease research. EHRIntelligence. Published May 2, 2023.
- GBD 2021 Diabetes Collaborators. Global, regional, and national burden of diabetes from 1990 to 2021, with projections of prevalence to 2050: a systematic analysis for the Global Burden of Disease Study 2021 [published correction appears in Lancet. 2023 Sep 30;402(10408):1132]. Lancet. 2023;402(10397):203-234. doi:10.1016/S0140-6736(23)01301-6
- Williams R, Karuranga S, Malanda B, et al. Global and regional estimates and projections of diabetes-related health expenditure: Results from the International Diabetes Federation Diabetes Atlas, 9th edition. Diabetes Res Clin Pract. 2020;162:108072. doi:10.1016/j.diabres.2020.108072
- EHRIntelligence. Veradigm, HealthVerity uses registry data for chronic disease research. EHRIntelligence. Published May 2, 2023.
- An Update on Lipoprotein(a): The Latest on Testing, Treatment, and Guideline Recommendations. American College of Cardiology.