A: Most people take about 10 - 20 minutes.
A: You can leave any question blank and move on.
A: Your privacy is protected in three key ways: First, we don't ask for any personally identifying information (e.g., date of birth, address or name). Second, we use standard encryption technology to encrypt all traffic between our servers and your browser (it's the same method used by banks.) Third, we use best practices to make our systems hack-proof, such as using the latest version of server software, keeping all software up-to-date, using strong passwords, and closing unnecessary ports.
A: The survey was designed by Dr. Cathy L. Pederson, Ph.D., Professor of Biology, of Wittenberg University, Dr. Greta Hochsteler Mayer, Ed.D., of the Mental Health and Recovery Board of Clark, Greene and Madison Counties, Ohio, and Jill Brook, M.A., of PatientsCount.org. Dr. Pederson is the founder of Standing Up to POTS and has a daughter with POTS. Dr. Mayer is an expert in psychology and suicide prevention. Jill is a long-time POTS patient, trained in health psychology and statistical analysis.
A: Yes, the current survey is conducted under the auspices of Wittenberg University and also Standing Up to POTS, a non-profit organization committed to improving the quality of life for POTS patients.
A: Yes, the Wittenberg University Institutional Review Board has approved the survey (IRB# 67-201516).
A: We, Jill and Mike Brook, privately fund the website and volunteer our time to do the statistical analyses and write about results. The monetary costs for the organization are few, and include hosting the website, security certificates, statistical analysis software, and small costs associated with owning a website.
A: No. Like any survey, we depend on respondents to hopefully read each question properly and give an accurate answer, but there's no way to know for sure. As for answers being representative of all POTS patients, we also cannot know. We recruited respondents by posting on Facebook support groups, so we may be predominantly representing those who spend more time in online support groups. This may skew toward more serious cases of POTS.
A: We use R, Excel and Wizard, depending on the calculation.
A: Sure! Just reach us via our contact page.