Diabetes registries have emerged as powerful tools that can help transform how healthcare systems provide treatment for people with diabetes. These comprehensive databases serve as the cornerstone for evidence-based decision-making and strategic healthcare planning for diabetes management to help delay and prevent complications.
Medical registries collect information on people with a particular disease, condition or risk factor that could lead to a health-related event. Stakeholders, including healthcare professionals, diabetes advocates and policymakers, can use the information collected for in-patient care, public health, technology assessment and research. Non-communicable diseases, such as diabetes and related complications, have also benefited from patient registries.
Evolving from isolated national databases to interconnected international networks, diabetes registries underpin many advancements in global diabetes management. These collaborative platforms transform how healthcare systems collect, share, and use patient data for improved outcomes. The guarantee of interoperability and standards ensures the effective integration of diabetes registries into existing healthcare information systems for seamless data sharing.
Today, there are approximately 500 diabetes registries worldwide, mainly in high-income countries. This gap reinforces the need for registries in low- and middle-income countries (LMICs) and cross-border collaboration and interoperability. Standardising rules and regulations between countries is one solution to ensure interoperability of data collection systems. A prime example is Health Level 7 (HL7) FHIR healthcare standards commonly used for data sharing between digital platforms.
Today, there are approximately 500 diabetes registries worldwide, mainly in high-income countries. This reinforces the need for registries in low- and middle-income countries and cross-border collaboration and interoperability.
The consensus when building a diabetes registry is to start small. One such example is the creation of the National Diabetes Registry (NDR) in Pakistan. Initially a small endeavour to collect real-time data on insulin distribution, in 2006, the registry evolved to include data on people with type 1 diabetes.
Then, in 2016, the registry began including data on people with type 2 diabetes following the publication of figures on the prevalence of the condition in Pakistan. In 2021, the IDF Diabetes Atlas reported 33 million people with diabetes in the country, which led to the development of an NDR in Pakistan. Today, information collected by the national registry informs a national action plan and policies for prevention and standardised clinical care. To ensure the accurate collection and integration of data, every person with diabetes uses their national identity card number to ensure interoperability with all the other national health registries.
The World Health Organization (WHO) selected the national diabetes registry in Pakistan as an example for LMICs. The next phase involves public and private sector stakeholders to develop guidelines for standardising care for use in these countries.
The global diabetes burden is increasing most rapidly in Asia today and is expected to do so in Africa in the future. The disparity in the availability of diabetes registries often leads to late diagnosis and a greater risk of diabetes-related complications, further burdening fragile healthcare systems and extending healthcare budgets.
Figures released by IDF in 2021 indicate that diabetes is projected to grow to affect 1 in 8 adults, approximately 783 million people, by 2045, an increase of 45%. Even more alarming, nearly half of people living with diabetes today are unaware they have the condition. This silent epidemic demands urgent attention from healthcare providers, policymakers and the public.
Diabetes registries and registries for diabetes-related complications can be part of the solution. More than data repositories, they have the potential to improve patient care, reduce healthcare costs, and ultimately save lives. They also support epidemiological research by identifying trends and informing policy initiatives to improve the well-being of people with diabetes. An estimated 150 examples of registries exist throughout IDF regions, representing an enormous potential to build a harmonised platform for standardised diabetes registries.
An estimated 150 examples of registries exist throughout IDF regions, representing an enormous potential to build a harmonised platform for standardised diabetes registries.
Cardiovascular and kidney disease are the two most common and life-threatening complications of type 2 diabetes. People living with diabetes are up to four times more likely than the general population to develop cardiovascular complications such as heart attack and stroke, and CVD is the leading cause of death in people with diabetes. Furthermore, research from the IDF Diabetes Atlas Report: CKD and Diabetes found that seven in ten people with diabetes were diagnosed with CKD due to an existing complication.
However, global data on prevalence, quality of care and outcomes for people living with these complications are not widely available.
The Integrative Cardiovascular and Renal Metabolic Health Registry, iCaReMe, is one example of how diabetes registries can work. A key component of the IDF Type 2 Diabetes and Cardio-Renal Complications programme, the iCaReMe registry provides global data on the prevalence, quality of care, and outcomes of people living with these complications.
iCaReMe is an international observational study that collects real-world evidence on people with type 2 diabetes and cardio-renal complications. Healthcare professionals can access a cloud-based tool to monitor data and follow up with their patients. The registry data are used to evaluate the quality of care, inform policies and raise awareness of risks associated with cardiovascular disease (CVD) and chronic kidney disease (CKD).
To date, more than 490 healthcare professionals from 30 countries have uploaded data on more than 38,000 people with type 2 diabetes to the iCaReMe registry.
A key component of the IDF Type 2 Diabetes and Cardio-Renal Complications programme, the iCaReMe registry provides global data on the prevalence, quality of care and outcomes of people living with these complications.
Diabetes registries have become a powerful component in transforming healthcare delivery. The insights from registry data shape policy decisions, improve treatment outcomes and address healthcare disparities within diverse populations and ethnicities.
The future of diabetes management relies heavily on expanding and strengthening these registry networks. Their success depends on continued technological advancement, international collaboration, and unwavering commitment to data quality. Medical professionals, researchers, and healthcare professionals are aligning to tap the power of registries to combat the growing diabetes burden and ensure better health outcomes for everyone with the condition.
Learn more about diabetes registries from this online event where experts share best practices for building diabetes registries, tips on starting small and how to avoid interoperability pitfalls. You’ll receive an overview of national diabetes registries and data collection methods. Healthcare professionals will learn the benefits of including data on diabetes-related complications, management plans and quality of care in their clinical practice. Additional learning points for diabetes advocates include leveraging data from registries to build advocacy campaigns for policies on better quality of care, standardised early diagnosis, and prevention of diabetes and diabetes-related complications.
Diabetes and cardiovascular disease, or CVD, are a global public health burden. People living with diabetes are up to four times more likely than the general population to develop cardiovascular complications such as heart attack and stroke. In this episode of D-Talk, host Phyllisa Deroze welcomes Professor Kamlesh Khunti to explore how registries are invaluable for managing and understanding diabetes and cardiovascular disease.
