Shortness of breath, or dyspnea, is a commonly reported symptom in dysautonomia patients. Our initial analyses indicate that at least half of our study participants experience shortness of breath, and that shortness of breath has a negative impact on quality of life, regardless of severity. This is the first large-scale patient reported outcome study on shortness of breath in dysautonomia. Your participation in this study, regardless of whether you have shortness of breath or not, is very important and can contribute to our overall understanding of dysautonomia.
General Information About the Study
This study has been approved by the UNCP Institutional Review Board (# 39-22, approval valid until January 2026). The Principal Investigator and Co-Investigators are UNCP faculty with expertise in Human Biology, Neurobiology, Immunology, Kinesiology, Economics, and Mathematics, while the Research Assistants are outstanding students in Mathematics and Biology (Biomedical emphasis). Funding for this study has been provided by the UNCP College of Arts and Sciences Dean's Scholarship Fund and by the UNCP Office of Sponsored Research Project Faculty Research and Development Grant Program. The study sponsor is Normalyte.
The aims of this study are to:
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Determine what percentage of people affected by dysautonomia experience shortness of breath.
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Establish if shortness of breath significantly impacts quality of life of dysautonomia patients.
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Identify which interventions dysautonomia patients find helpful for shortness of breath.
What you are asked to do:
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Complete three short questionnaires about shortness of breath and quality of life. This should take no more than 20 minutes.
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Select from a list any other health condition(s) you have that might also cause shortness of breath (for example, heart failure, lung disease, etc.). This should take 3-5 minutes.
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Select from a list of therapeutic interventions that have improved your shortness of breath (if any). This should take 3-5 minutes.
Length of the study:
Cohort 1: Longitudinal Patient Reported Outcome Study -ENROLLMENT CLOSED
This patient reported outcome study is ongoing (year two of three) and is not currently recruiting new participants. Please check back for new enrollment opportunities. Participants enrolled in this cohort will complete the surveys once a year for three years.
Cohort 2: Clinical Validation Study -OPEN TO ENROLLMENT
This is a one year study for dysautonomia patients diagnosed at the Carolina Concussion and Mild Traumatic Brain Injury and COVID Recovery Clinics only. Participants enrolled in this cohort will be asked to complete surveys once.
How the study is conducted:
The study is conducted online, so you will not have to leave your home. You can access the questionnaires on our secure servers directly from your electronic device. The link to the screening questions is below. If you pass the screening questions, you will be directed to the survey page.
Benefits of enrolling in the study:
Your participation in this study is completely voluntary and confidential. Your participation may not have any direct benefit to you. There is no monetary compensation for your participation. However, your participation will help us understand how common shortness of breath is in dysautonomia and how it affects this patient population. This is an important step which we hope will help reduce time to diagnosis and improve the quality of life of dysautonomia patients.
While there is no monetary compensation for this study, we have partnered with Normalyte to offer anyone who enrolls in the study a 50% discount code for any of their electrolyte products, valid for one year. The discount code will display after the study enrollment.
Community Partnerships:
We have established partnerships with several non-profit organizations that aim to advocate for dysautonomia patients and to connect the dysautonomia patient population with the biomedical community. Our goals are to improve our understanding of processes implicated in autonomic dysfunction and to improve quality of life of dysautonomia patients. Among our partners are: The Dysautonomia Project, Dysautonomia Support Network, Dysautonomia Information Network, Dysautonomia Louisiana, Los Angeles Dysautonomia Network, Standing Up To POTS, EDS Warriors of Utah, and Ehlers Danlos (EDS) Life Hacks. We are also partnering with community leaders in the broad field of connective tissue diseases (CTD), which are often comorbid with dysautonomia: Mr. Jon Rodis - President of the Connective Tissue Coalition, and Ms. Justine Case, rare disease and accessibility advocate.
Clinical Partnerships:
We will begin recruiting a cohort of dysautonomia patients in collaboration with the University of North Carolina COVID Recovery and Concussion and Mild Traumatic Brain Injury Clinics in February 2024.
BEGIN SURVEY
Currently, we are only enrolling participants for the Clinical Validation cohort. If you are a dysautonomia patient who is followed at the UNC COVID Recovery or Carolina Concussion and Mild Traumatic Brain Injury Clinics and you are interested in the study, please click the 'START NOW' link below to access the screening questions. If you qualify for the study, you will be directed to the study Informed Consent Form and the questionnaires.
The Study Team
Principal Investigators:
Silvia E. Smith, Ph.D., Assistant Professor, Biology Department, UNCP
Andrew Latham, Ph.D., Assistant Professor, Mathematics and Computer Science Department, UNCP
Co-Investigators:
John O'Dell, M.S.N, M.B.A, Lecturer, Biology Department, UNCP
Daniel Parisian, Ph.D., Assistant Professor, Department of Economics and Decision Science, UNCP
Ash Walker, DHSc., ACSM-CEP, EIM-III, FAACVPR, Assistant Professor, Kinesiology Department, UNCP
Research Assistants:
Ava A. Cox, Medical Biology Student
Karlee Roberts, Psychology Student
Shelley Chavis, Biotechnology Student
Holly Hansen, Biology Student