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Disease registries track incidence, treatment, and response for specific conditions. Hospitals, private physicians, and government agencies maintain records to evaluate treatment effectiveness, monitor side effects, and predict disease progression. Registries also identify disease clusters, determine causality, and help pharmaceutical companies develop new drugs.
A disease registry is a database set up to track the incidence, treatment, and response to treatment for a specific condition. Records can be maintained by large entities, such as hospitals or government agencies, or by private physicians using evidence-based treatment methodologies. Information gleaned from disease registries is helpful in determining disease causes, transmission patterns, and treatment effectiveness. Pharmaceutical companies also use data collected from registries to track patient responses and to adjust for risk factors.
Hospital records track data on all patients who have been treated for certain conditions within the institution, regardless of residency. Chronic diseases, such as diabetes and asthma, are often monitored this way. The data collected is organized into a disease registry, which helps doctors evaluate the effectiveness of treatment, monitor side effects and predict the course of the disease. Individual patient responses to treatment and overall health patterns can be compared so that evidence-based protocols can be developed and refined. Additionally, the registries allow researchers to review treatment plans generated by multiple institutions to compare results and make more general recommendations.
Geographic registries allow researchers to identify disease clusters. These data facilitate the understanding of the causes of the disease under study. For example, if there is a significantly higher-than-expected incidence of cancer near a particular manufacturing facility, people in charge of the disease registry can alert researchers who could then examine the plant to determine which byproducts could be contributing to the disease. Comparison of registries is particularly useful for determining causality and identifying risk factors.
Private doctors often keep a record of the diseases they frequently treat. Over time, this data can help a physician quickly determine the best course of treatment for a patient’s specific set of symptoms. Additionally, data from multiple patients often reveals common patterns of disease progression, risks for associated conditions, and potential complications that physicians can use to demonstrate evidence-based practices to justify their claims.
Many pharmaceutical companies rely on disease registries to facilitate the development of new drugs. Data gleaned from hospital, government and private databases can be combined to give a pharmaceutical researcher a deeper understanding of the disorder he or she seeks to treat. In addition to information about patient responsiveness, data about potential complications and commonly associated diseases can be especially valuable. For example, a pharmaceutical company might start avoiding treatments that stress the heart if disease registry data indicates that the target condition has an elevated risk of associated heart complications.
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