What is a registry?
A registry is a dataset specifically created to collect data for research purposes and centered around a specific disease state or drug. Registry data often offer a greater level of relevant detail on included patients compared to more traditional real world evidence databases such as administrative claims data or electronic health record data. Additional information that a registry may capture (and importantly, also code into structured data fields, making research easier) include data on biomarkers, disease severity measures, blood/lab data for specific tests, etc.
Registries are usually put together by a central body which contracts or collaborates with various clinical sites and gets information from them on relevant patients. This information may be provided in a variety of means including sharing of EMR notes or specific case report forms that individual clinical sites fill out for each patient. The registry organizer may then take relevant elements and transform them into structured data elements for inclusion in the registry.
Disease state registries focus on patients who have a specific diagnosis or clinical condition whereas a drug-specific registry may only capture patients using a particular or a group of drugs. Both may have value in addressing specific research questions.
Registries are typically sponsored by academic organizations, patient advocacy organizations, professional medical societies, companies, or pharmaceutical manufacturers. They are often available to research groups including those within pharmaceutical companies for certain fees.