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Biostatistics, Outcomes, Database, and Communications

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Director


Beatrice Ugiliweneza, PhD

C.O.R.E.

Comprehensive

Using a collaborative approach within the Translational Research division of the Kentucky Spinal Cord Injury Research Center (KSCIRC) at the University of Louisville, the Biostatistics and Outcomes division of this  Core conducts research and support activities regarding the individual and collective outcomes related to Spinal Cord Injury (SCI) across the continuum of care and across the lifespan. The Biostatistics and Outcomes division analyzes how the health of individuals with SCI is affected in the real world based on their own reported experiences and detailed analyses of data coming from the KSCIRC Scientific Cores as well as all relevant external data.

We start with KSCIRC-collected data and then supplement with as much other healthcare data as is available and/or relevant to evaluate short- and long-term outcomes of patients with Spinal Cord Injury (SCI). Such other data may include the scientific literature, healthcare insurance claims and cost data, (electronic) medical or health records (EM/HR), Patient Reported Outcomes (PRO) and Quality of Life (QoL) assessments. We then perform evidence syntheses. This means that we develop or apply existing methods of analysis, systematically interpret the analyses and inform clinical practice or help design the next round of clinical investigation. A valuable benefit of this effort is that we gain an understanding of the impact of the clinical care received by each individual with SCI from different stakeholders’ perspectives (e.g., the patient and their loved ones, caregivers and other healthcare professionals). The desired result is strong, objective evidence that improves both the speed of innovation and the quality of care delivered. Specifically, the Biostatistics and Outcomes division of this core helps to:

  • Track individual patient journeys across the continuum of care
  • Access analytics for targeted cohorts
  • Measure and benchmark therapeutic outcomes
  • Link outcomes to value using relevant data and standardized measures
  • Generate more powerful real-world evidence, by expeditiously using emerging clinical data
  • Answer challenging questions that impact clinical practice in treating Spinal Cord Injury; this includes healthcare delivery and economics

Our Database Division is compromised of talented individuals with various backgrounds in information technology (IT), database management, web design, operations and IT support. with our unique skill set we are able to manage various databases, as well as collaborate with and provide research cores with IT resources to help improve efficiency and productivity.

The Communications Division disseminates internal and external content using print medium through articles, journals, branding, and collateral; using digital medium through website, intranet, video, and photography; using publication medium as white paper, articles, journals, and social media. We provide the outside world with current, fact-based, timely scientific information in the field of SCI recovery.

Objective

The Biostatistics and Outcomes Division has three main objectives:

  1. To evaluate the effects of all KSCIRC interventions and assessments on participants’ outcomes (clinical and quality of life). An immense amount of data are generated from the various scientific research programs and protocols here at the KSCIRC. Information contained within this data is key to uncovering the effectiveness of our interventions.
  2. To conduct research and analyze the interaction of patients with SCI with the healthcare system and the effect of the interventions provided at KSCIRC on that interaction. In this role, the core focuses on applying health services research, health analytics and health economics methods in methodological design and evaluation of interventions, conducting research at multiple levels of analysis, including patient (individual or population), care team, organization, and environment levels.
  3. Serve as an internal Clinical Analytics consultant for all the scientific cores of KSCIRC. In this role, the core team members have the responsibility to assist and support the other cores with their analytical needs including study design, statistical analysis, report and dissemination of results.

Database and Communications Division supports other cores with various aspects of data management including process analysis, data systems design and implementation, data integration and review, general reporting and analysis. The core is particularly responsible for the NeuroRecovery Network  and NACTN data systems. We also provide various IT support across all cores.

Members of our team maintain and update the VICTORY OVER PARALYSIS website as well as the social media platforms.

Research-driven

This Core is dynamically intertwined with the scientific research at KSCIRC. To this end, we use data science methodologies to analyze data collected both within KSCIRC and from external databases (claims data, medical records, registries, etc.). Topics of interest include but are not limited to:

  • Description of the health care trajectory of individuals with spinal cord injury
  • Evaluation of the effect of intervention on health outcomes and health services research
  • Comparative effectiveness of the interventions provided by our research team with the usual care in terms of healthcare resources use and cost
  • Cost associated with spinal cord injury: health care cost, out of pocket cost and loss of productivity cost using claims databases
  • Evaluation of quality of life and patient reported outcomes

Our core uses the latest analytical tools and methodologies to evaluate the health outcomes, health services research and health economics associated with spinal cord injury. We focus on clinical outcomes, quality of life and patient reported outcomes and, in some cases, devise novel analytical algorithms that provide new insight and enhance the effectiveness of new rounds of research.

We make it easier to collect, store and analyze data that is gather by our scientific cores for various research projects. And to provide a means to communicate information to the right person at the right time.

Evidence-based

We maintain expertise in various quantitative methodologies including biostatistics, epidemiology, econometrics, data science and analytics. The core fosters multi-disciplinary collaboration across many disciplines including Public Health, Engineering, Business, Mathematics, Psychometrics, Rehabilitation Sciences, Clinical Analytics and Outcomes Research. The core operates within KSCIRC, across the University of Louisville and with colleagues in the global network of institutions and organizations dedicated to the recovery of function of individuals with spinal cord injuries.

The support that we provide to the various cores allows them to easily perform a plethora of assessments and adjust if needed as we continue to expand our breadth of research.

Adult NeuroRecovery


Translational Cores

Metabolic, Neuromuscular, and Skeletal

Cardiovascular and Pulmonary

Movement Performance and Locomotor Recovery

Urogenital and Bowel

Neurophysiology

Engineering

Research Medical

Biostatistics, Outcomes, Database, and Communications

Regulatory

Finance and Administrative


Investigators