The Value of a Registry

The management of intracranial AVMs (iAVMs) remains controversial, due in large part to the findings from the ARUBA (A Randomised Trial of Unruptured Brain Arteriovenous Malformations) study, which cast doubt on the safety and efficacy of intervention compared to medical management alone. Despite being a randomized control trial (RCT), ARUBA was plagued with multiple limitations, including selection bias and heterogeneity of treatment approach. Such limitations highlight challenges that can limit the value of an RCT and thereby emphasize the potential value of other types of research methods, including the use of registries. Registry-based studies are observational studies focused on a specific clinical disease, patient population, or type of therapy. They are designed to be more inclusive than RCTs, with large numbers of patients representing a diverse set of demographic characteristics, disease severities, and treatments. In this chapter, the authors address the benefit of utilizing registries for the study of iAVMs, as well as reviewing registry-specific considerations and support for the use of registries in neurosurgical disease..