Disease registry

Disease or patient registries are collections of secondary data related to patients with a specific diagnosis, condition, or procedure, and they play an important role in post marketing surveillance of pharmaceuticals. Registries are different from indexes in that they contain more extensive data.

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.

Registries are less complex and simpler to set up than Electronic Medical Records that according to a recent survey are only used by 9% of small offices where almost half of the US doctors work.

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.

More than 130 million Americans live with chronic diseases and chronic diseases account for 70% of all deaths in the US."The medical care costs of people with chronic diseases account for more than 75% of the nation’s $2 trillion medical care costs."

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, the New York City created a HbA1C Registry (NYCAR) to help health providers keep track of patients with diabetes.

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

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%.

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Wikipedia