What Is a Disease Registry?
A disease registry is a database that is set up to track the incidence, treatment and response to treatment for a specific condition. Registries can be maintained by large entities, such as hospitals or government agencies, or by private physicians utilizing evidence-based treatment methodologies. Information gathered from disease registries is useful for determining causes of diseases, patterns of transmission and treatment efficacy. Pharmaceutical companies also use data collected by registries to track patient responses and to adjust for risk factors.
Hospital registries track data for all patients who have been treated for certain conditions within the institution, regardless of residency. Chronic illnesses, such as diabetes and asthma, are frequently tracked in this way. The data gathered is organized into a disease registry, which helps physicians evaluate treatment effectiveness, monitor side effects and predict the course of the disease. Individual patient responses to treatment and general health patterns can be compared so that evidence-based protocols can be developed and refined. In addition, registries enable researchers to examine treatment plans generated by multiple institutions to compare results and make more general recommendations.
Geographic registries enable researchers to identify disease clusters. This data facilitates an understanding of what causes the disease being studied. For example, if a significantly higher-than-expected incidence of cancer occurs next to a certain manufacturing plant, the people who are in charge of the disease registry can alert researchers who could then examine the plant to determine what byproducts might contribute to the disease. Comparing registries is especially helpful for determining causality and identifying risk factors.
Private physicians often maintain a disease registry for illnesses that they treat frequently. Over time, this data can help a physician quickly determine the best course of treatment for a patient's specific set of symptoms. In addition, data on multiple patients often reveals common patterns for disease progressions, risks for associated conditions and potential complications that the doctor can use to demonstrate strong evidence-based practices to justify his or her insurance claims.
Many pharmaceutical companies rely on disease registries to facilitate the development of new medications. Data that is gathered from hospital, government and private databases can be combined to offer a pharmaceutical researcher a deeper understanding of the disorder that he or she seeks to treat. In addition to information on patient responsiveness, data on potential complications and commonly associated diseases can be especially valuable. For example, a pharmaceutical company might begin avoiding treatments that stress the heart if disease registry data indicates that the target condition has a high risk for associated cardiac complications.
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