The Australian Postural Orthostatic Tachycardia Syndrome Patient Registry

Postural orthostatic tachycardia syndrome (POTS) is heterogenous disorder characterized by postural induced tachycardia, dizziness, fatigue, malaise, exercise intolerance and a myriad of concomitant symptoms such as poor sleep quality, centralised pain, headache, impaired cognitive ability, reproductive, gastrointestinal and urinary dysfunction. The syndrome disproportionally affects young women (ratio 5:1) and is associated with significantly reduced quality of life (QOL) and increased morbidity; rendering a reported 25% of suffers unable to work. The Australian Postural Tachycardia Syndrome Patient Registry (Oz-POTS) will collect data on at least 100 patients who attend the specialist POTS clinic run by Dr Dennis Lau, Professor at The Australian Dysatuonomia and Arrhythmia Research Collaboration , Adelaide, Australia (ADARC). The aim of the registry is to characterise individuals with postural orthostatic tachycardia syndrome (POTS), in addition to identifying those who may be interested in participating in future clinical research. Data will be collected for 5 years. The University of Adelaide, Centre for Heart Rhythm Disorders will serve as the Registry Data Coordinating Centre and will manage data entered into the web based, REDCap program. Consent will allow: - transfer of relevant deidentified patient medical information from medical notes into database -initial semi-structured interview by phone to confirm and complete medical data. - complete yearly health related questionnaires by electronic link including a medical history update form and socio-economic status details as well as POTS related health questionnaires.