The Hospital Research Foundation Group is proud to be supporting a first-of-its-kind registry for Australians living with Postural Orthostatic Tachycardia Syndrome (POTS).
Thanks to a $300,000 grant over three years from The Hospital Research Foundation Group, the Australian-New Zealand POTS Understanding, Longitudinal Surveillance & Epidemiology Registry (ANZ-PULSE) will collect real-world data from people living with the condition to improve diagnosis, treatment, care pathways and long-term outcomes.
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 POTS symptoms can include 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.
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.
Dr Marie-Claire Seeley
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, including time away from school and work, healthcare use, and differences in access to diagnosis and care across metropolitan, regional and remote communities.
Importantly, the registry has been co-designed with people with lived experience of POTS, carers and consumer advocates to ensure the research reflects the priorities and needs of the community.
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.
Prof Paul Flynn
The Hospital Research Foundation Group CEO, Professor Paul Flynn, said the organisation was proud to support a project which had the potential to improve understanding and care for people living with POTS.
“Many Australians living with POTS face long waits for diagnosis and challenges accessing consistent care and support,” Prof Flynn said.
“This important registry will help build the evidence needed to improve treatment pathways, inform health policy and support better outcomes for people and families affected by the condition.”
