The Big POTS Study: Patient Powered Research and Plans for the Future

The Big POTS Study shares preliminary findings on the demographics, symptoms, and comorbidities associated with Postural Orthostatic Tachycardia Syndrome (POTS). Dr. Satish Raj highlights the study's aim to provide a large cross-sectional view of POTS patients outside major research centers, capturing a more community-based perspective of the condition. The study addresses the impacts of POTS, including financial and social aspects, and notes significant diagnostic delays. It emphasizes that POTS primarily affects young women and often occurs with comorbid conditions such as migraines and Ehlers-Danlos Syndrome (EDS). The survey data suggest POTS is not commonly recognized at first by healthcare providers, leading to misdiagnosis and delayed treatment. Key findings indicate significant functional impairment in patients, with many reporting missed school or work. Future plans include longitudinal follow-ups to better understand progression and outcomes. The importance of patient-engaged research, as spearheaded by Dysautonomia International, is also discussed.