investigator

specific aims

Aim 1: Utilize the OneFlorida Data Trust to assess the prevalence and characteristics of Neuromyelitis Optica Spectrum Disorder (NMOSD) across Florida.

Aim 2: Identify potential disparities related to gender, race, and ethnicity in NMOSD outcomes, including disease progression, treatment access, relapse rates, and overall disability and mortality.

research strategy

The study leverages the OneFlorida Data Trust, a vast database of electronic health records on over 17 million individuals in Florida. By accessing this resource, the research will systematically analyze NMOSD incidence and treatment patterns, focusing on racial, ethnic, and gender-related disparities. Key variables include access to high-efficacy treatments, rates of misdiagnosis, symptom management, and health outcomes.

approach

Data Collection: Identify NMOSD patients within the OneFlorida Data Trust using ICD-10 codes and assess antibody status (e.g., aquaporin-4 and MOG antibodies).

Data Analysis: Examine demographic factors (age, gender, race, ethnicity) and investigate any diagnostic delays, treatment disparities, relapse management, and severity markers (e.g., emergency visits, hospital admissions).

milestones & timeline

The project spans one year, starting December 1, 2023, with milestones including:

1. Months 1-3: IRB approval and data acquisition.
2. Months 4-6: Complete data collection and initial analysis.
3. Months 7-9: In-depth data analysis and synthesis.
4. Months 10-12: Draft and submit findings for publication.

significance

NMOSD disproportionately affects African-American individuals, who may experience more severe symptoms and higher mortality rates. Current research lacks comprehensive data on these disparities, which limits the ability to tailor treatments. This study aims to fill this gap, providing critical insights that can guide interventions and improve outcomes for underrepresented NMOSD populations.