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In its simplest form, a disease registry could consist of a collection of paper cards kept inside "a shoe box" by an individual physician. Most frequently registries vary in sophistication from simple spreadsheets that only can be accessed by a small group of physicians to very complex databases that are accessed online across multiple institutions.
They can provide health providers (or even patients) with reminders to check certain tests in order to reach certain quality goals.
An electronic medical record keeps track of all the patients a doctor follows but a registry only keeps track of a small sub population of patients with a specific condition.
Registries target certain conditions because medical expenses are unevenly distributed: most health care expenses are spent treating patients with a few chronic conditions.
For example, the 2002 expenses with diabetes in the US was $132 billion, and this was around 12% of the US medical budget. Diabetes accounts for 25% of the Medicare budget. Given this, diabetes is one of the conditions targeted by registries. Diabetes is also amenable to this because there is a target population that can be defined according to certain rules and there is evidence that certain tests like retina exams, LDL levels, HgbA1c levels can correlate with quality of care in diabetes.
Because of the diabetes impact, New York City created a HbA1C Registry (NYCAR) to help health providers keep track of patients with diabetes. The NYC Hemoglobin A1C Registry (NYCAR) : Diabetes Prevention and Control Program : NYC DOHMH Another example of disease registry is the New York State CABG Registry that tracks all cardiac bypass surgery performed in the state of New York.
Cerebral palsy is an example of a chronic or lifelong medical condition. It is a major cause of childhood disability worldwide. The Australian cerebral palsy register represents an example of a recognized disease register. The aim of the Australian CP register is to conduct surveillance or constant observation of cerebral palsy prevalence, clinical patterns and complications. It is also tasked with providing recommendations to public health policy makers and improving health service delivery to individuals with cerebral palsy. More recently, several developing countries such as Bangladesh and Sri lanka have established cerebral palsy registers geared toward achieving the same above-noted aims.
On a survey of 1040 US physician organizations published in Journal of the American Medical Association, diabetes registries are used by 40.3%, asthma registries are used by 31.2% of physician organizations, CHF registries are used by 34.8% and depression registries are used by 15.7%.
Other tests like Pap smears are also useful to keep track in registries because there is evidence that when done annually in women of certain ages groups can detect and prevent cervical cancer.
Many of measures tracked are based on evidence-based medicine and are defined and standardized by national organizations like the NCQA.
Patient registries are particularly useful for evaluating the safety of orphan drug products as well as the safety of drugs in specific populations. However, it is getting more and more common to use data of different healthcare and disease registries innovatively for different purposes such as for generating evidence for healthcare efficiency, market access planning and pharmacovigilance
"The use of joint registries has proven beneficial abroad. In Australia, regulators use such data to force manufacturers to justify why poorly performing hips or knees should remain available, and products have been withdrawn as a result. In Sweden several years ago, surgeons alerted by their national registry stopped using a badly flawed hip long before their American counterparts did. A few medical organizations in the USA, like Kaiser Permanente, operate their own registries to good effect and the Hospital for Special Surgery in New York has recently set up a registry. Experts say that the United States wastes billions of dollars annually on medical treatments which may not work. But the financial and human consequences are also large when evidence exists but is not collected."
In the United States, Medicare also started a 1.5% P4P contract based on health measures that can be tracked by disease registries.
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