Neurological registry data collection methods and configuration.

issues related to data collection and registry configuration. When designing a disease registry, it is important to consider the registry’s purpose and target population as this will influence the type of data, source(s) of data, and the manner in which it is collected. A data dictionary defining the specific data elements to be collected is key to ensuring registry data quality. Compliance of physicians and patients who provide registry data is instrumental to data collection and should be addressed early. Additionally, it is important to consider if the registry will be linked to other databases. Finally, it is important to address procedures for making changes in the registry and to establish what types of documentation are necessary. In preparation of this section, we reviewed the literature, scholarly sources, and consulted with medical experts and registry/database specialists on the topics mentioned above.