How a global registry could help solve Asia's diabetes crisis
By: Nancy Dreyer, MPH, PhD | November 14, 2016
ADORE is a modern, online research platform with the potential to improve the lives of millions of people.
Asia Pacific is in the midst of a diabetes epidemic that shows no signs of abating. Of the 415 million people worldwide with diabetes type I and II, more than half (232 million) live in Southeast Asia and the Western Pacific, according to 2015 data from the International Diabetes Federation. Among these countries, China has the largest diabetes epidemic, where 11.6 percent of Chinese adults have the disease. The social, economic and healthcare challenges related to this crisis in Asia already are enormous, and industry stakeholders are struggling to implement care strategies that meet the needs of this patient population.
In the lead up to World Diabetes Day on November 14, I wanted to share an exciting project I have been involved in that will help shed light on this widespread disease by providing physicians, researchers, payers and regulators with new insights into the way diabetic patients are diagnosed and treated in various Asian countries.
In November 2015, The American College of Cardiology (ACC) announced plans to join with the National Heart Centre Singapore (NHCS) and QuintilesIMS to create a global diabetes registry that will support diabetes and cardiometabolic research. Once it is fully launched, the Asian Diabetes Outcomes Registry (ADORE) will be a real-world, prospective, longitudinal, investigator-led registry that will collect comprehensive data for type 2 diabetes treatment patterns and outcomes throughout Asia by studying how patients are treated in everyday medical practice, and how they fare. The goal of this registry is to create a network of sites with thousands of patients in care settings throughout Asia — including, in China, South Korea, Taiwan, Singapore, Indonesia, Malaysia, Thailand, the Philippines, Hong Kong, India, Vietnam and Sri Lanka — to fuel smarter research in this disease area.
Diabetes is not a one-size-fits-all disease. To begin to address the diabetes crisis in Asia Pacific, stakeholders first need to understand the unique attributes of these patients and their disease journey, and how they differ from diabetes patients in other regions. This would include gathering information about when and how they are diagnosed, what treatment paths they typically follow, who responds and who doesn’t, and whether the risk-benefit profiles for various treatments are the same among various Asian ethnicities. There are also likely to be substantial differences between Asian countries in the registry, based on their geography, economic status, health systems and access to care, age, gender, co-morbidities and a host of other characteristics. Since there has been low adoption of healthcare technology in Asia, thus far, this has limited the availability of this type of secondary data for research. That is where the ADORE registry can begin to help fill some important gaps in knowledge.
ADORE is a modern, online research platform which gives diabetes patients and their medical care providers in Asia Pacific a place to record standardized information about their diagnosis, condition, co-morbidities and treatments, including what prescriptions were given and whether they were filled, what other treatments are being used including non-prescription and complementary treatments, and if patients were hospitalized or had other costly healthcare that may not have been reported to their doctors. These data can be used to provide vital insights into the patient experience with the goal of understanding which Asian patients are affected, what treatments they are receiving, the risks and benefits of these treatments in each region and whether the benefit-risk profiles of various treatments are the same in various Asian ethnicities and health systems. The goal of assembling this information is to translate it into knowledge that can be used to identify treatments that will be effective, hopefully leading to more intelligent health care spending and driving better patient outcomes.
While still in the planning stages, ADORE promises to drive the next iteration of data collection around diabetes in Asia. The information we gather will help identify treatment patterns in Asian patients, describe effectiveness and safety for key treatment classes and product types in more diverse populations and quantify real-world treatment adherence. It will also provide information about major complications of diabetes and understanding of treatment outcomes in sociocultural subgroups.
One of the other benefits of this registry is that it will not only capture important data, but will use QuintilesIMS’ state-of-the-art tools to collect and analyze the results. This is a key component of the value proposition of ADORE, as ‘big data’ on its own generates little value unless you have a sophisticated real-world design and analytical approaches to generate meaningful and actionable information.
To make the most of this vital real-world database, public and private stakeholders will need to work together to get it built and encourage its use by patients and physicians across the region, so that it can generate a robust, representative data that can be used to inform clinical practice. This registry has the potential to improve the lives of millions of people, and it will be great if QuintilesIMS can contribute to its success.