Evaluation of Neurological Patient Registries

Abstract

Over the past decade, there has been an appreciable increase in the number of national as well as international registries for a variety of neurological conditions, with corresponding increase in the amount of publications arising from these efforts [ref]. The registries were established for determining the natural history of a specific disease, the effectiveness of new treatments, the quality of care and/or other patient-related outcomes. The purpose of this chapter is to provide an approach to registry evaluation and quality assessment.In preparation of this chapter, we reviewed current literature and consensus guidelines on registry evaluations. We also consulted with medical experts and registry/database specialists as part of a national registry meeting to provide feedback and consensus on criteria to be used for evaluation of disease registries in Canada. RELEVANT LITERATUREDespite the importance of registry evaluation, there is currently a paucity of reports related to neurological disease registry evaluation. Other examples were related to diseases such as rheumatoid arthritis, 270 trauma, 271 liver transplantation, 104 and cancer 272 . Domains of the registries that were evaluated include recruitment numbers, missing data, reporting, audit of guidelines, access to national and institutional health databases, patient involvement and collaborations. Key references and tables are provided as resources to assist with registry evaluation. Research QualityDetailed discussion of registry quality assurance and quality control can be found in Chapter 7 of this guideline. A further discussion on the validation and interpretation of registry data including from a quality perspective can be found in Chapter 8 of this guideline. intended for use with observational studies. The list provides 18 general and 4 specific guidelines for complete reporting of cohort, case-control and cross-sectional studies. The authors had intended for the statement to be a tool (instead of a rigid standard) to help assess the quality of reports arising from observational-based studies. They acknowledged the inherent limitations of the STROBE statement, including an inability to address the reporting of all types of studies. Nonetheless, for registries based primarily on observational methods, the STROBE statement is a useful guide. Existing Guidelines for the Reporting of Research StudiesSimilar guidelines are available for the reporting of randomized clinical trials, meta-analysis, and systematic reviews. The QUOROM (Quality of Reporting of Metaanalyses) 274 and the CONSORT (Consolidated Standards of Reporting Trials) 275 statements are guidelines for assessing the quality of reports that were developed at separate consensus meetings. Like the STROBE statement, these guidelines are consisted of checklists of domains that should be considered as part of the evaluation. These domains are pre-defined and the ways in which they should be assessed are described. Similarly, guidelines on how best to report perform systematic reviews include...