Vanderbilt University Medical Center (VUMC) and Dysautonomia International are partnering to launch the first large international study on postural orthostatic tachycardia syndrome (POTS), which impacts an estimated 500,000 to 3 million patients in the United States and millions more around the globe.
POTS is a disabling disorder in which patients — typically women of childbearing age— become symptomatic when upright. This can be associated with exertional intolerance, sleep problems and “brain fog.”
Results from the POTS study will help investigators learn more about the possible underlying causes and risk factors for developing the syndrome, what treatments are effective, and the economic, educational and social impact of POTS on patients and their families, according to lead investigator Satish Raj, M.D., adjunct associate professor of Medicine at VUMC.
“Up until now, most POTS studies have been relatively small and have come from tertiary care referral centers, so one criticism that could be made is that the patients in the study may not represent the average POTS patient in the community,” said Raj, also an associate professor of Cardiac Sciences at the Calgary Syncope and Autonomic Dysfunction Clinic.
“The sheer size of this study will allow us to get a handle on important questions that we could not do in other ways. For example, we will better understand the costs of living with POTS, both financial and social. We will be able to better quantify disability in POTS,” he said.
Dubbed “The Big POTS Survey” by patients who helped design it, the official name of the study is “The Diagnosis and Impact of Postural Tachycardia Syndrome (POTS) – An International Survey.”
The survey is open to all patients diagnosed with POTS by a physician. It takes 20-30 minutes to complete and can be saved if the participant needs to take breaks.
“There is so much information that we have yet to learn about POTS, and this survey enables patients to share their experiences with researchers more than ever before,” said Jennifer Samghabadi, R.N., a nurse practitioner and a member of Dysautonomia International’s Patient Advisory Board, who helped design the survey.
“We’re so grateful to Dr. Raj and Vanderbilt University for engaging the POTS patient community in the research process,” said Lauren Stiles, co-founder and president of Dysautonomia International. “Patient-powered research is an innovative approach to studying POTS. We hope to have 2,000 POTS patients complete the survey within the first three months, which would make this the largest POTS study conducted to date.”
To learn more about the survey or to participate, go here.
Founded in 2012 by a group of patients, caregivers, physicians and researchers, Dysautonomia International is the leading non-profit organization focused on assisting patients and families impacted by autonomic nervous system disorders. The organization funds research, educational programs for medical professionals, patient empowerment programs and public awareness campaigns.
