Thank you for your interest in this research. This survey is conducted by the team at Jenkins NeuroSpine to better characterize neurological symptoms and seizure-like episodes in people with hypermobile Ehlers-Danlos Syndrome (hEDS), other hypermobility or connective tissue disorders, craniocervical instability, dysautonomia (including POTS), and related conditions.
What you'll do: Before beginning, you will answer two brief eligibility screening questions confirming your US state or territory of residence and your age. If eligible, you will then complete one anonymous online survey about your medical history, symptoms, episode characteristics, evaluations, treatments, and quality of life. The full survey takes approximately 15-20 minutes to complete.
Who can participate: US residents who are adults and have reached the legal age of majority in their state or territory (age 18 in most US states; age 19 in Nebraska and Alabama; age 21 in Puerto Rico), and who have experienced these symptoms, episodes, and/or have (or strongly suspect) a hypermobility-spectrum or connective tissue disorder. Individuals who have not reached the age of majority in their state or territory, or who reside outside the United States, are not eligible to participate and will be redirected before accessing survey questions.
Risks and benefits: This study is minimal risk. Some questions ask about distressing medical experiences and may cause mild emotional discomfort. You will not directly benefit, but your responses may help inform future research, clinical guidelines, and patient care.
Anonymity and data use: No names, email addresses, IP addresses, or other directly identifying information are collected. Responses are reported only in aggregate or de-identified form, and any free-text quotation used in publications will be paraphrased or de-identified. De-identified data may be retained indefinitely and used in research publications, conference presentations, and clinical guidelines, and may be shared with collaborating researchers. Please do not include identifying details (your name, a specific provider's name, etc.) in any free-text answer. Because the survey is anonymous, we cannot remove your individual responses after submission.
Participation is entirely voluntary. You may skip any question or stop at any time by closing your browser, with no consequence. There is no compensation for participating. This survey is for research only and is not a substitute for medical evaluation. If you have health concerns, please contact a qualified healthcare provider.
For any questions, please reach out to the Jenkins NeuroSpine Research Coordinator, Baruch Goodman, at bgoodman@jenkinsneurospine.com
For questions about your rights as a research participant, or to raise concerns or complaints with someone outside the research team, please contact the Study Subject Advisor, Advarra IRB, 6100 Merriweather Drive, Suite 600, Columbia, MD 21044, by phone at 877-992-4724 (Monday–Friday, 8:30am–8:00pm EST), and reference protocol PRO00094933.
By clicking "I agree" below, you confirm that you are a US resident, that you have reached the legal age of majority in your state or territory, that you have read the information above, and that you agree to participate voluntarily under the terms described.
