Evaluation of partial and total splenectomy in children with sickle cell disease using an Internet-based registry.

BACKGROUND: Clinical outcomes of children with sickle cell disease (SCD) who undergo total or partial splenectomy (PS) are poorly defined. The purpose of this retrospective study was to initiate an Internet-based registry to facilitate analysis of clinical outcomes for these children. We hypothesized that both surgical procedures would be well tolerated and would eliminate risk of splenic sequestration. METHODS: We developed a web-based registry using the Research Electronic Data Capture (REDCap) platform. Children were included if they had SCD and underwent total splenectomy (TS) or PS between 2003 and 2010. Clinical outcomes were compared between cohorts, with follow-up to 1 year. RESULTS: Twenty-four children were included, TS (n = 15) and PS (n = 9). There were no differences in surgical time or intraoperative blood loss. The length of stay was longer after PS (4.1 ± 1.7 days) compared to TS, (2.4 ± 1.2 days, P = 0.02). Within 30 days of surgery, 2 (20%) patients had acute chest syndrome (ACS) following TS and 2 (15%) patients had ACS after PS. During 1-year follow-up, no patient in either cohort had recurrent splenic sequestration, venous thrombosis or overwhelming postsplenectomy sepsis. All children who were transfused preoperatively to prevent recurrent splenic sequestration successfully discontinued transfusions. CONCLUSIONS: Both TS and PS result in favorable hematologic outcomes and low risk of adverse events for children with SCD. A REDCap-based registry may facilitate data entry and analysis of clinical outcomes to allow for comparison between different types of splenectomy.

Assessing Research Collaboration through Co-authorship Network Analysis.

Interdisciplinary research collaboration is needed to perform transformative science and accelerate innovation. The Science of Team Science strives to investigate, evaluate, and foster team science, including institutional policies that may promote or hinder collaborative interdisciplinary research and the resources and infrastructure needed to promote team science within and across institutions. Social network analysis (SNA) has emerged as a useful method to measure interdisciplinary science through the evaluation of several types of collaboration networks, including co-authorship networks. Likewise, research administrators are responsible for conducting rigorous evaluation of policies and initiatives. Within this paper, we present a case study using SNA to evaluate inter-programmatic collaboration (evidenced by co-authoring scientific papers) from 2007-2014 among scientists who are members of four formal research programs at an NCI-designated Cancer Center, the Markey Cancer Center (MCC) at the University of Kentucky. We evaluate change in network descriptives over time and implement separable temporal exponential-family random graph models (STERGMs) to estimate the effect of author and network variables on the tendency to form a co-authorship tie. We measure the diversity of the articles published over time (Blau's Index) to understand whether the changes in the co-authorship network are reflected in the diversity of articles published by research members. Over the 8-year period, we found increased inter-programmatic collaboration among research members as evidenced by co-authorship of published scientific papers. Over time, MCC Members collaborated more with others outside of their research program and outside their initial dense co-authorship groups, however tie formation continues to be driven by co-authoring with individuals of the same research program and academic department. Papers increased in diversity over time on all measures with the exception of author gender. This inter-programmatic research was fostered by policy changes in cancer center administration encouraging interdisciplinary research through both informal (e.g., annual retreats, seminar series) and formal (e.g., requiring investigators from more than two research programs on applications for pilot funding) means. Within this cancer center, interdisciplinary co-authorship increased over time as policies encouraging this collaboration were implemented. Yet, there is room for improvement in creating more interdisciplinary and diverse ties between research program members.

Research management team (RMT): a model for research support services at Duke University.

Collecting and managing data for clinical and translational research presents significant challenges for clinical and translational researchers, many of whom lack needed access to data management expertise, methods, and tools. At many institutions, funding constraints result in differential levels of research informatics support among investigators. In addition, the lack of widely shared models and ontologies for clinical research informatics and health information technology hampers the accurate assessment of investigators' needs and complicates the efficient allocation of crucial resources for research projects, ultimately affecting the quality and reliability of research. In this paper, we present a model for providing flexible, cost-efficient institutional support for clinical and translational research data management and informatics, the research management team, and describe our initial experiences with deploying this model at our institution.