INOPP Forum
Conceptual differences between Registries and Studies
Quote from VigiServe Admin on January 30, 2021, 1:50 PMPatient registries are often integrated into routine clinical practice with systematic and sometimes automated data capture in electronic healthcare records. Whilst the duration of a registry is normally open-ended, that of a registry-based study is dictated by the time needed to define and collect data relevant for the specific study objectives. Studies may also require the introduction of specific procedures, questionnaires or data collection tools. Studies are set up and managed based on a limited number of endpoints and a specific protocol, whereas patient registries should focus on system specifications in order to ensure continuous, efficient and collaborative data collection, safe data hosting and availability of retrievable, interoperable and re-usable data.
A registry can be used as a source of patients for studies based on either primary data collection (where the events of interest for the study are collected directly from the patients, caregivers, healthcare professionals or other persons involved in the patient care) or secondary use of data already collected (where the study uses data collected for another purpose, analogously to the use of electronic healthcare records). For this purpose, registry data can be enriched with additional information on outcomes, lifestyle data, immunisation or mortality information obtained from linkage to the existing databases such as national cancer registries, prescription databases or mortality records.
Patient registries are often integrated into routine clinical practice with systematic and sometimes automated data capture in electronic healthcare records. Whilst the duration of a registry is normally open-ended, that of a registry-based study is dictated by the time needed to define and collect data relevant for the specific study objectives. Studies may also require the introduction of specific procedures, questionnaires or data collection tools. Studies are set up and managed based on a limited number of endpoints and a specific protocol, whereas patient registries should focus on system specifications in order to ensure continuous, efficient and collaborative data collection, safe data hosting and availability of retrievable, interoperable and re-usable data.
A registry can be used as a source of patients for studies based on either primary data collection (where the events of interest for the study are collected directly from the patients, caregivers, healthcare professionals or other persons involved in the patient care) or secondary use of data already collected (where the study uses data collected for another purpose, analogously to the use of electronic healthcare records). For this purpose, registry data can be enriched with additional information on outcomes, lifestyle data, immunisation or mortality information obtained from linkage to the existing databases such as national cancer registries, prescription databases or mortality records.