Publications by authors named "Katelynn Stanley"
Article Synopsis
- A new workflow called MMFP-Tableau has been developed to automate the integration of clinical and research data from different sources, making it easier for clinicians and researchers to access and analyze data in a user-friendly platform.
- This framework uses a centralized server (Alteryx) to manage data, which is then visualized through Tableau, allowing for high-level analytics with minimal software development needed.
- The platform enhances precision medicine efforts by facilitating access to robust health system datasets, improving collaboration with biopharma, and promoting advanced analytics for better clinical and research outcomes in rare diseases.
Purpose: Optimizing individualized clinical care in heterogeneous rare disorders, such as primary mitochondrial disease (PMD), will require gaining more comprehensive and objective understanding of the patient experience by longitudinally tracking quantifiable patient-specific outcomes and integrating subjective data with clinical data to monitor disease progression and targeted therapeutic effects.
Methods: Electronic surveys of patient (and caregiver) reported outcome (PRO) measures were administered in REDCap within clinical domains commonly impaired in patients with PMD in the context of their ongoing routine care, including quality of life, fatigue, and functional performance. Descriptive statistics, group comparisons, and inter-measure correlations were used to evaluate system feasibility, utility of PRO results, and consistency across outcome measure domains.