Shortness of breath, or dyspnea, is a commonly reported symptom in dysautonomia patients. Several studies have shown that anywhere from 25% to 75% of dysautonomia experience this symptom, with different severity. Shortness of breath can be an isolating factor and can have an impact on the quality of life of dysautonomia patients. The mechanisms underlying shortness of breath in dysautonomia are complex and have been described in the literature. However, no large-scale systematic patient reported outcome study on shortness of breath in dysautonomia has been conducted to date. Thus, 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 October 2025). The Principal Investigator and Co-Investigators are UNCP faculty with expertise in Human Biology, Neurobiology, Immunology, and Mathematics, while the Research Assistants are outstanding students in Mathematics and Biology. 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 aims of this study are to:
-
Determine what percentage of people affected by dysautonomia experience shortness of breath.
-
Establish if shortness of breath significantly impacts quality of life of dysautonomia patients.
-
Identify which interventions dysautonomia patients find helpful for shortness of breath.
What you are asked to do:
-
Complete three short questionnaires about shortness of breath and quality of life. This should take no more than 20 minutes.
-
Select from a list any other health condition(s) you have that might also cause shortness of breath (for example, heart failure, lung disease, mitochondrial disease, or severe anemia). This should take 3-5 minutes.
-
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:
The study will last for 3 years; however, you will be asked to complete the surveys (about 30 minutes of your time) only once a year. This will allow us to see if you experience changes in shortness of breath and quality of life over time. Thus, you will complete three sets of surveys about shortness of breath and quality of live over the course of three years. You can withdraw from the study at any time by emailing the study team at breathe@uncp.edu.
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. An invitation will be sent to you via email if you meet the study inclusion criteria. The link to the screening questions is below.
Who can enroll in this study:
Anyone who has a formal diagnosis of dysautonomia and who is 18 years or older can enroll in this study. Since the questionnaires are only available in English, you must be fluent in the English language. All adult dysautonomia patients can participate, regardless of whether they experience shortness of breath.
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.
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.
SURVEY IS CURRENTLY PAUSED- ENROLLMENT TARGET HAS BEEN REACHED. STUDY MAY RESUME AT A LATER TIME.
BEGIN SURVEY
If you are interested in the study, please click the "Start Now!" button 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.
We look forward to hearing from you!
The Study Team
Principal Investigator:
Silvia E. Smith, Ph.D., Assistant Professor of Biology
Co-Investigators:
Courtney Alexander, Ph.D., Assistant Professor of Biology
Crystal Walline, Ph.D., Associate Professor of Biology
Andrew Latham, Ph.D,, Assistant Professor of Mathematics and Computer Science
Research Assistants:
Lindsay Branch, Medical Biology Student
Find us on FaceBook here
