A bulletin board of current research projects looking for subjects or volunteers.
Invisible Disability in the Workplace
received December 2023
Contact Information: Michelle Perone, Ed.D(c), M.A., email:MPerone0648@csm.edu
I am currently a doctoral student at College of Saint Mary in Omaha, NE in Educational Leadership with emphasis in training and development. For my dissertation, I am conducting research on invisible disability as it relates to perceptions of workplace inclusivity. For this study, I am seeking participants who are employed full time, have a physical or mental health condition that can be considered an invisible disability, and are age 19 or older. The purpose of this study is two-fold. First, the study aims to better understand the lived experiences of those who have invisible disabilities in the workplace. The second objective of this study is to examine employee perceptions of organizational inclusivity as it relates to invisible disability disclosure and inclusion training within an employment setting. This research could be beneficial in understanding the experiences of those in the workplace living with invisible disability. Additionally, it has the potential to impact disability inclusivity and training practices within organizations.
Those who choose to participate will be asked to complete an interview with me virtually on Zoom. The interview will take approximately 60 minutes. At the conclusion of the interview process, participants will also be asked to review a transcript and preliminary research findings for accuracy and have a chance to contribute additional thoughts and information to the study. Data collected during this study will appear in my dissertation and may be published in research journals and presented at academic and professional meetings. Participation in this research study is voluntary and will be anonymous. Participants will not incur any costs outside of contributing time. If you are selected and agree to participate you may withdraw from the study at any time and for any reason. Please contact me at MPerone0648@csm.edu if you have an interest in participating. Thank you!
EDS & Pain Management (inactive)
Survey received April 20, 2023
I am Sadie Bauer, a student researcher enrolled in AP Research at Townsend Harris High School at Queens College. I am conducting a study to assess how people with Ehlers-Danlos Syndrome perceive how medical providers address their reports of pain. It is a fully anonymous and voluntary survey that takes around five minutes to complete. Participants will be asked to identify the pain they experienced due to EDS, the response of their medical provider(s), and the treatments they received, if any.
I greatly appreciate participation in my research study. If you have any questions about the study, please feel free to contact me at sadieb5@nycstudents.net, or my advisor Franco Scardino at Townsend Harris High School (fscardi@schools.nyc.gov).
The survey is here. Thank you for your participation.
Economic Impact of EDS
Received April 5, 2023 from Jane Schubert PhD and Susan Mills MPH RN at the Penn State College of Medicine
What is this study about?
To better understand the economic impact of Ehlers-Danlos Syndromes, researchers at Penn State College of Medicine are conducting a survey. The aggregate results will be published and made available to guide health services organization and policy.
You should take this survey if:
§ You or someone in your family has Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD).
§ You are 18 years or older.
§ You have knowledge of your family’s finances.
About the survey:
- It is anonymous.
- We ask about approximate expenses for 1 calendar year: 2022. It will be good to gather financial expenses related to EDS before you begin (such as medical bills, itemized tax return).
- The estimated time to complete this questionnaire is 30 minutes. It doesn’t have to be finished in one sitting. You can save your responses and complete it later.
- If more than one person in your family has EDS, please complete a separate questionnaire for each family member.
This study was approved by the Penn State College of Medicine’s Institutional Review Board.
If you have questions, please contact:
Jane Schubart PhD
Penn State College of Medicine, Hershey, PA jschubart@pennstatehealth.psu.edu
Link to the survey: here.
Shortness of Breath in Dysautonomia: A Patient Reported Outcome Study (currently closed, but check back for opportunities)
Received April 4, 2023 from Silvia Smith, PhD and Principal Investigator at the University of North Carolina Pembroke
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, and Standing Up To POTS.
Start now!
If 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 All of Us Research Program
March 2023 Newsletter details what long-term research is, how researchers can use people’s data to understand how diseases develop, and offers ways patients can contribute to this type of research by sharing their own data.
Here are some quick details:
- What is it? All of Us has a simple mission: to speed up health research. To do this, they’re asking at least one million people to share health information. Researchers then can conduct thousands of studies on health and disease.
- Why join? Ever wonder why you can (or can’t) curl your tongue? Or why one generation in your family has certain diseases? All of Us aims to reflect the diversity of America to help researchers find health patterns and discoveries that weren’t visible before. By joining, you would be contributing to research that could improve health for generations to come. You could also learn more about your own health.
- How to join? Go to JoinAllofUs.org/mgb. You’ll need your email address or mobile phone number to sign up.
If you want to learn more, visit mgb.JoinAllofUs.org. There you can read FAQs, watch videos, and see who is involved.
Thanks for thinking about joining. Together, we could help change the future of health.
Visit the All of Us research newsletter by the NIH here.
EDS and CTD New England/MA Support Group 
Leave a comment