(POTS): Priorities for POTS care and research from a 2019 National Institutes of Health Expert Consensus Meeting – Part 2, 2021, Raj et al

Full title: Postural orthostatic tachycardia syndrome (POTS): Priorities for POTS care and research from a 2019 National Institutes of Health Expert Consensus Meeting – Part 2

Abstract
The National Institutes of Health hosted a workshop in 2019 to build consensus around the current state of understanding of the pathophysiology of postural orthostatic tachycardia syndrome (POTS) and to identify knowledge gaps that must be addressed to enhance clinical care of POTS patients through research. This second (of two) articles summarizes current knowledge gaps, and outlines the clinical and research priorities for POTS.

POTS is a complex, multi-system, chronic disorder of the autonomic nervous system characterized by orthostatic intolerance and orthostatic tachycardia without hypotension. Patients often experience a host of other related disabling symptoms. The functional and economic impacts of this disorder are significant. The pathophysiology remains incompletely understood.

Beyond the significant gaps in understanding the disorder itself, there is a paucity of evidence to guide treatment which can contribute to suboptimal care for this patient population. The vast majority of physicians have minimal to no familiarity or training in the assessment and management of POTS.

Funding for POTS research remains very low relative to the size of the patient population and impact of the syndrome. In addition to efforts to improve awareness and physician education, an investment in research infrastructure including the development of standardized disease-specific evaluation tools and outcome measures is needed to facilitate effective collaborative research. A national POTS research consortium could facilitate well-controlled multidisciplinary clinical research studies and therapeutic trials. These priorities will require a substantial increase in the number of research investigators and the amount of research funding in this area.

Open access, https://www.sciencedirect.com/science/article/pii/S1566070221000667

 

https://twitter.com/user/status/1411110397256605699

 

"...a larger and intentional investment in POTS research..."
(my bolding)

Specifically allocated, and commensurate with disease burden - that's step one.

Just guessing here, but is part of the reason POTS has been under researched and underfunded, due to the narrow view that POTS is a temporary condition found mostly in teenage girls?

 

$10M/y is still peanuts given the size of the economic impact. Not even counting the human impact but that's clearly not relevant to anyone making those decisions. At least some of that Long Covid funding should go for dysautonomia, if it doesn't then frankly the whole thing will probably be so botched it won't produce anything anyway.

Part 1 here: https://www.s4me.info/threads/pots-...2019-nih-expert-consensus-meeting-2021.21083/.