After reading the educational posters and completing the quiz, participants will be able to: Describe the completeness of treatment information at an academic tumor registryUnderstand how data completeness at the hospital level affects researchDescribe the variables utilized in conducting this study.
Genetic variants in the SCN8A gene underlie a wide spectrum of neurodevelopmental phenotypes that range from severe epileptic encephalopathy to benign familial infantile epilepsy to neurodevelopmental delays with or without seizures. A host of additional comorbidities also contribute to the phenotypic spectrum. As a result of the recent identification of the genetic etiology and the length of time it often takes to diagnose patients, little data are available on the natural history of these conditions. The International SCN8A Patient Registry was developed in 2015 to fill gaps in understanding the spectrum of the disease and its natural history, as well as the lived experiences of individuals with SCN8A syndrome. Another goal of the registry is to collect longitudinal data from participants on a regular basis. In this article, we describe the construction and structure of the International SCN8A Patient Registry, present the type of information available, and highlight particular analyses that demonstrate how registry data can provide insights into the clinical management of SCN8A syndrome.
Purpose: To assess the association between travel distance to an academic health system and overall survival for patients with human papillomavirus (HPV)-associated cancers.
Methods: Using hospital-based cancer registry data from 2005-2019, we calculated unidirectional travel distance from each patient's geocoded address to our academic health center through network analysis. We categorized distance as short (<25 miles), intermediate (25-74.9 miles), or long (≥75 miles). The primary outcome was time from the date of initial diagnosis to the date of death or last contact. We used multivariable Cox proportional hazards regression to evaluate the association between travel distance and overall survival. We also estimated the adjusted observed 5-year survival rate.
Results: Patients with HPV-associated cancers traveling distances that were intermediate (hazard ratio [HR], 1.23; 95% CI, 1.06-1.43) and long (HR, 1.15; 95% CI, 1.01-1.32) had a higher hazard of death than the short-distance group. The adjusted 5-year observed survival rates for HPV-associated cancers were lowest in the intermediate-distance group (60.4%) compared with the long-(62.6%) and short-distance (66.2%) groups.
Conclusions: Our findings indicate that travel distance to an academic health center was associated with overall survival for patients with HPV-associated cancers, reflecting the importance of considering travel burden in improving patient outcomes.
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