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Vanderbilt University and Dysautonomia International Launch "The Big POTS Survey" To Study the Impact of Postural Tachycardia Syndrome
|Vanderbilt University and Dysautonomia International have partnered to launch the largest international study on Postural Tachycardia Syndrome (POTS). POTS impacts an estimated 500,000 to 3,000,000 Americans and millions more around the globe, but no large international studies have been conducted to date.
According to the study's lead investigator Satish R. Raj, MD MSCI, Adjunct Associate Professor of Medicine at Vanderbilt University's Autonomic Dysfunction Center, "[t]he information collected as part of this survey will help us learn more about the possible underlying causes and risk factors for developing POTS, treatments, and the economic, educational and social impact of POTS on patients and their families." Dr. Raj is also an Associate Professor of Cardiac Sciences at the Calgary Syncope and Autonomic Dysfunction Clinic, which is part of the Libin Cardiovascular Institute at the University of Calgary. He serves on Dysautonomia International's Medical Advisory Board.
"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, 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. Patient-powered research is an innovative approach to studying POTS," explained Lauren Stiles, Esq., president of Dysautonomia International and co-Investigator on the study. "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."
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 was approved by Vanderbilt University's Institutional Review Board. It takes 20-30 minutes to complete and there is a 'save' option for those who need breaks while completing the survey. The Big POTS Survey is open to all patients diagnosed with POTS by a physician. POTS patients younger than 18 years of age will require a parent or guardian to complete the survey. There is no cost to participants to take part in this survey.
To learn more about the survey or to participate, visit:
The BIG POTS Survey.