January 28, 2023
Please help us to better understand POTS! Dr. Pederson and Standing Up to POTS are launching a new online survey that takes 15-20 minutes to complete. We are seeking adults with a POTS diagnosis for this IRB approved survey. Please answer every question, and don't overthink it! We appreciate your time and effort to help us better understand the triggers, symptom load, and quality of life for people with POTS!
Find the survey here: https://www.standinguptopots.org/POTSresearchstudy
Episode Transcript
[00:00:00] Jill Brook: Hello POTS community. We are here today with Dr. Cathy Pederson, who is just back from Germany where she gave a presentation on chronic illness, perceived burdensomeness, all kinds of her good research where, you know what? She was voted the best presentation at the entire conference. And so now she's on to her next project, and we need your help. Dr. Pederson, thank you for being here today. What are you up to now? [00:00:26] Dr. Cathy Pederson: Thank you so much, Jill. You know, it's been a couple years since we've released a survey like this, but I've got a big survey takes about 15 or 20 minutes to finish and it's a variety of different instruments that are asking questions about what triggered it in the first place, as well as questions about different types of symptoms, but also the severity of those symptoms and then quality of life. And so I'm really excited about it. I think we have about 15 papers that have come out of surveys just like this in the past few years. So yeah, we're hoping that people will fill them out for us. That'd be great. [00:01:08] Jill Brook: Yes, listeners, if you could do us this one little favor and take 15 or 20 minutes to fill out the survey, I promise you that Dr. Pederson, she's like a machine. She publishes faster and harder than anyone. She will take the data that you donate and she will make it mean something, we promise. Dr. Pederson, where can people go to take this survey? [00:01:31] Dr. Cathy Pederson: Yeah, it's being launched from the Standing Up to POTS website. they can actually see it on the big button on our front page. And so we will put the link in the show notes here. We're also gonna have it all over social media, so you only need to take it one time. And the only qualifications really is that you have to be at least 18 years old, so adults only, and you have to have a physician diagnosis of POTS. We need the POTS community to really help us with this and I'm really excited about it. I think we're going to learn some things as a result of this research. [00:02:09] Jill Brook: And probably there's some parents out there wondering, do you want parents to fill it out for children under 18 years old, or do you only want respondents who are over 18 answering for themselves? [00:02:22] Dr. Cathy Pederson: We only want adults answering for themselves. So I know it's hard to wait for some of those things until your child reaches 18, but we really wanna be sure that the data is accurate and we also don't wanna compromise ethically and have the parent and the 16 year old sitting together. That's not something that we wanna do. [00:02:45] Jill Brook: Perfect. [00:02:45] Dr. Cathy Pederson: Adults only. [00:02:46] Jill Brook: Well, I'll admit I got a sneak peek at the questions, and I'm so excited for the research that you're doing now and the answers that you're gonna get and the awareness it's gonna bring. So please, everybody, if you could spare 15 minutes, it's at StandingUptoPOTS.Org. [00:03:02] Dr. Cathy Pederson: Absolutely. So go to StandingUptoPOTS.Org and fill it out for us. That would be wonderful folks. [00:03:10] Jill Brook: Hey, thanks guys. We really appreciate it. We'll put your data to good use. Awesome. Thanks Dr. Pederson. [00:03:16] Dr. Cathy Pederson: Thank you, Jill. [00:03:18] Jill Brook: Okay, bye guys.