Barrow Clinical Outcomes Center
The Barrow Clinical Outcomes Center was established in 2016 to improve the quality of neurological care through a data-driven approach. The center systematically collects comprehensive clinical data for analysis and reporting of patient outcomes. This data repository, the Barrow Clinical Outcomes Database, is the foundation for several high-impact studies geared to improve clinical outcomes, reduce cost, apply new technology, and improve delivery of neurological care.
Treatment of neurological diseases is primarily aimed at improving quality of life, maximizing function, and extending life expectancy. Delivery of high quality patient care requires a complete understanding of our clinical outcomes so that our treatment paradigms can continue to evolve. Registries are increasingly being utilized across all medical specialties, including the neurosciences, for this purpose.
The advantage of prospective registries over randomized controlled trials lies not only in their timeliness, feasibility, and cost-effectiveness with respect to patient enrollment and data collection, but in their true representativeness of real-world care. Outcomes data are critical to achieving effective and efficient health care and can be used to guide clinical decisions, examine care outcomes, and identify opportunities for improvement.
As a renowned neurological disease treatment institution with high clinical volume and diverse patient population, Barrow Neurological Institute is an ideal setting for the development of an outstanding neurological outcomes program. We aim to develop a neurological disease database and outcomes center in order to identify opportunities for quality improvement and maximize the effectiveness of clinical care at here. The Barrow Clinical Outcomes Database has been proposed in an effort to improve the fidelity of our clinical data with the ultimate goal of more sophisticated and reliable analysis of our clinical outcomes. Through this effort, our clinical outcomes can continuously be monitored and treatment strategies adjusted to maximize patient outcomes.
The Barrow Clinical Outcomes Database exists on a web-accessible, cloud-based, electronic clinical data capture system, VisionTree Optimal Care (VTOC)®. This interoperable, patient-centered outcomes and engagement platform is 21CFR11 compliant and delivers accuracy of data collection, validation, and multi-center research and registry reporting.
Clinical data such as imaging, neurological status, length of stay, and adverse events are collected via electronic medical record and supplemented with validated patient reported outcomes to assess health-related quality of life metrics and patient satisfaction. Capturing these outcomes at predefined follow-up time points allows for a longitudinal and comprehensive understanding of the patient experience and effectiveness of clinical care. This robust data repository allows for centralization of clinical, functional, health quality, and economic information that can be utilized to inform best medical practices.
The Spine Outcomes Registry at Barrow has been created for comprehensive, high-quality data collection in patients with a wide variety of spine conditions. This includes clinical data, health-related patient assessments, patient satisfaction, and complication rates. These measures are to be analyzed longitudinally at pre- and postoperative time points in an effort to improve treatment, maximize patient quality of life and outcomes, and evaluate comparative effectiveness of various surgical interventions.
- Jay Turner, MD, PhD
- Juan Uribe, MD
- Kumar Kakarla, MD
- Randall Porter, MD
- Laura Snyder, MD
- David Barranco, MD
Pituitary Adenoma Study: RAPID Registry
The RAPID (Registry for Adenomas of the Pituitary and related Disorders) Registry is a multicenter surgical outcomes collaboration database founded to facilitate studying patient outcomes and best practices in pituitary disorders. The conditions being studied include acromegaly, Cushing’s disease, and non-functioning pituitary adenomas. The RAPID registry will track data elements important to studying pituitary surgery patient outcomes, which include patient medical history, surgery, pathology, follow-up, and remission status.
Cerebrovascular Study: BRAVO
The purpose of the BRAVO (Barrow Registry for Aneurysm and Vascular Outcomes) project is to collect detailed clinical data and outcomes on patients who present to our high-volume institute with a variety of cerebrovascular lesions, including aneurysms, arteriovenous malformations, arteriovenous fistulae, cavernous malformations (CM), cerebrovascular bypass, moyamoya disease, stroke, and other ischemic disorders. The study aims to measure and refine treatments to provide optimal evidence-based therapies for patients with vascular lesions.
Vestibular Schwannoma Outcomes Research (VSOR)
Vestibular schwannoma (also called acoustic neuroma) is a benign and slow-growing tumor of cranial nerve VIII. There are multiple treatment options available, including surgical resection, radiosurgery and observation. Due to the benign nature of the tumor it is important to consider a modality with significant favorable benefit to risk ratio, which makes the decision making for the management of this disease particularly difficult. The absence of a treatment algorithm makes the choice even more challenging.
With these challenges in mind, the VSOR registry aims to:
- Compare the functional outcomes and radiological and audiological progression among patients managed with different surgical approaches: stereotactic radiosurgery versus surgery versus observation alone
- Identify the prognostic factors affecting the functional and surgical outcomes
- Ultimately, propose a decision-making algorithm that can be used on routine basis for the management of this pathology