The Australian Postural Orthostatic Tachycardia Syndrome Patient Registry
The Australian Postural Orthostatic Tachycardia Syndrome Patient Registry (Oz-POTS)
The University of Adelaide
1,000 participants
Aug 20, 2021
Observational
Conditions
Summary
The aims of this registry are to: • Create a registry of patients with POTS to better understand the condition and its associated conditions. • Collect clinical data to support future research with the aim to: o improve quality of life and outcomes for patients with POTS o characterize disease course and reasons for the onset of POTS o characterize the health and economic burden for patients with POTS o study incidence, cause, prognosis and treatment of POTS • Collect baseline and ongoing information about POTS • Collect data on treatment for patients with POTS to report outcomes and impact of that treatment • Link data from the Medical Benefits Scheme and Pharmaceutical Benefits Scheme to determine the associated health service and economic burden associated with POTS. This will assist us to understand the economic impacts of POTS on the public health system. • Collect baseline and longitudinal health information to better understand and report treatment, health, economic, and social impacts of POTS..
Eligibility
Inclusion Criteria5
- years old or older
- Understand and sign the informed consent document
- POTS diagnosis must be made / confirmed at a participating Registry centre.
- The diagnostic evaluation must include, at a minimum, a medical history, physical examination, standing test/tilt table test, ECG, echocardiogram, Holter monitor
- Diagnostic criteria for POTS met as per the following: sustained heart rate elevation of greater than 30 beats/min within 10 minutes (greater than 40 beats/min in adolescents). No other secondary cause of these symptoms. Greater than 3 months since onset of orthostatic intolerance symptoms.
Exclusion Criteria3
- Non-consent for participation in registry
- Non-English Speaker
- Terminal illness
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Interventions
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.
Locations(1)
View Full Details on ANZCTR
For the most up-to-date information, visit the official listing.
ACTRN12621001034820