The Great Disease: A Patient Registry Bus Ride Out of Hades
Learn about setup tips and tricks to overcome some of the unique challenges of multi-specialty patient registries.
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Tumor / Repeating Clinical Event Research: Solving Data Entry
Learn about data entry requirements and functionality associated with capturing accurate, timely and complete tumor / clinical event data.
Healthcare Research: When To Shout The Emperor Has No Clothes
Learn about inherent limitations to Plan-Do-Study-Act (PDSA) methods and how to avoid them in your quality improvement design.
Mapping Clinical Data To Well-Being Domains: Epilepsy Wellness Wheel
Learn about mapping clinical data to Health and Well-being domains, and building reports that are quickly and accurately understood.
Medication Adherence: Toppling Barriers With A Learning Health System
Learn about improving medication adherence using a Learning Health System. Case examples in an epilepsy population.
Learning Health Systems: Removing the Tinted Glasses
Learn about opening up health model components to better guide and evaluate the work of Learning Health Systems.
Tremor Registry: Shaking Up The Data Work Camp
Steps taken to transform a publication only patient registry into a useful clinical tool and engages patients in their care.
Neuropsychology 2.0: Sailing the SHiP-NP To New Ports
Summary of new tools that improve scoring and test interpretation, and engage patients in a collaborative, interac
Patient Disease Surveys: Turning Giants Into Windmills
Summary: Disease surveys in clinical settings have substantial benefits, but their use has been limited by a number of practical...
Visualizing Disease States: A Tale of Two Raters
Part IV Summary: Multi-rater assessment is a common approach used to characterize disease states, particularly among populations at risk...
Disease Information: Making It Relevant To Patients
Summary: There is a common look among newly diagnosed patients, the wide-eyed stare of information overload. Like deer in headlights, it...
Melanoma Tumor Location: A Utility-Driven Approach to Common Data Elements
Summary: The National Institute of Health (NIH) Common Data Elements (CDEs) initiative has taken a largely theory-driven approach to...
COVID-19 Data Definition: Standards for Clinical Research
Summary: A massive research effort has been mobilized to address the COVID-19 pandemic. Timing is a critical to this investigative work...
Visualizing Disease States: A COVID-19 Experience
Part III Summary: The COVID-19 pandemic has mobilized all areas of research in an effort to minimize its affects. This article examines...
Visualizing Disease States: Slaying Heterogeneous Data
Part II Summary: This is the second in a series of articles examining nontraditional methods (i.e., excluding plots, charts, graphs) for...
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