Evaluation of Neurological Patient Registries

Jean K. Mah, Janet Warner, Ruth Hall, Eric E. Smith, Thomas Steeves, Elizabeth Donner, James Marriott, Megan Johnston, Mark Lowerison, Paula de Robles, Vanessa K. Noonan, Essie Mehina (+3 others)
2013 Canadian Journal of Neurological Sciences  
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
more » ... 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 LITERATURE Despite 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 Quality Detailed 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. Existing Guidelines for the Reporting of Research Studies The Strengthening of Reporting of Observational Studies in Epidemiology (STROBE) statement 273 is a 22-item checklist Suppl. 2 -S60
doi:10.1017/s0317167100017200 fatcat:ifsc3acnljcwtlnjkt7tnmmxni