Photo: Dr Marie-Claire Seeley, CEO of the Australian POTS Foundation
Your Home Lottery ticket purchase is helping improve care for Australians living with Postural Orthostatic Tachycardia Syndrome (POTS).
POTS is a condition affecting the autonomic nervous system, which controls automatic body functions such as heart rate, blood pressure and circulation.
An estimated 800,000 Australians live with POTS, mostly women and girls. Common symptoms include a rapid heart rate, dizziness, fainting, fatigue, brain fog and exercise intolerance, which can significantly affect education, employment and daily life.
Despite growing awareness of POTS, many people continue to face delays in POTS diagnosis, high out-of-pocket costs and inconsistent access to treatment and specialist support.
But now, thanks to a $300,000 grant over three years from The Hospital Research Foundation Group, a new research registry will be established to collect real-world data from people living with the condition to improve diagnosis, treatment, care pathways and long-term outcomes.
The ANZ-PULSE registry aims to address these gaps by tracking patient experiences and health outcomes over time, helping researchers and clinicians better understand the condition and identify the most effective treatments and models of care.
The project – led by Dr Marie-Claire Seeley, CEO of the Australian POTS Foundation and senior research fellow with Adelaide University – will also examine the broader economic and social impacts of POTS.
Dr Seeley said the registry would help “identify gaps in diagnosis and care across underserved communities and ultimately improve equity of access for people living with POTS, regardless of where they live or their background”.
“The Hospital Research Foundation Group’s support reflects a strong commitment to improving outcomes for Australians living with complex and under-recognised health conditions through research that is community-informed, practical and designed to drive real-world change,” Dr Seeley said.
Thank you for your support!