edriscoll Posted March 3, 2023 Report Share Posted March 3, 2023 This us a Patient-reported outcome study on the effect of dyspnea on the quality of life for people living with dysautonomia DINET members are encouraged to complete a short survey to participate in this IRB-approved study by the University of North Carolina Pembroke. Read more about this study on their website or visit their Facebook page for more info. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted March 3, 2023 Report Share Posted March 3, 2023 1 hour ago, edriscoll said: This us a Patient-reported outcome study on the effect of dyspnea on the quality of life for people living with dysautonomia DINET members are encouraged to complete a short survey to participate in this IRB-approved study by the University of North Carolina Pembroke. Read more about this study on their website or visit their Facebook page for more info. Done! Seems like a well designed survey. I was impressed at the number of choices offered. Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 3, 2023 Report Share Posted March 3, 2023 Took the survey as well. I am so compliant.... Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 6, 2023 Report Share Posted March 6, 2023 Well got a response from the survey. Dear Participant, Thank you for consenting to being a part of our research study on shortness of breath in dysautonomia. Your responses have been received and will be used anonymously to conduct our study. We will post updates on the first data analysis later this year. Thank you again for your contribution to this study. Warm regards, Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted April 17, 2023 Report Share Posted April 17, 2023 I'm gonna do this study. I picked up a TV and have been out of breath for 30 minutes despite laying down. Being out of breath was normal when POTS hit me but it's getting out of hand now. Before POTS hit me i would laugh at kids getting out of breath before me. Just walking has me out of breath. I'm getting concerned. Quote Link to comment Share on other sites More sharing options...
Diannna Posted May 21, 2023 Report Share Posted May 21, 2023 Thanks for the post. I went ahead and did the survey. Everyone have as good weekend as much as possible. Quote Link to comment Share on other sites More sharing options...
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