Linkage between neurological registry data and administrative data.

This section of the guideline discusses considerations when planning and designing a registry that will require linkage to administrative data. Administrative data may include hospitalization and surgical or other procedure data; physician billing data; vital statistics data (e.g. births, deaths); prescription and other pharmacy data; long-term care services and admissions; and other data collected by provincial and territorial governments, health authorities and hospitals or care sites for administrative purposes. Linkage of registry data to administrative data may create unique challenges and considerations during registry design. For example, linking to administrative data may require patient identifiers such as a personal health number that might not otherwise be collected. Linkage may present schedule challenges or constraints with respect to registry launch, operation, and data analysis. And finally, linkage of administrative data to registry data may impact the data fields collected and research ethics board (REB) approval required for the registry. Clinical registries often capture a wealth of clinical information, and as a result help address and answer key health related questions. However linkage of registry data to other data sources is sometimes necessary to achieve a particular registry’s pre-determined objectives. For example, a large number of patients with a particular neurological condition may selfregister to a particular registry, and agree for their data to be linked to administrative data. Linkage to administrative data may allow for confirmation of a diagnosis that may not have been possible solely by self-report, enhancing the validity and quality of the registry data. Although administrative health data were originally used solely for “administrative purposes”, they have become a rich source of health data for research and surveillance purposes. They are many advantages to administrative data, in that they are often population-based capturing nearly every contact with the health care system, they are often cost effective, they can allow Linkage Between Neurological Registry Data and Administrative Data