Living with Ehlers-Danlos syndrome

THIS PROJECT IS CLOSED.

Thank you for taking interest in my research study, "A Medical and Personal Needs Assessment of Individuals with Ehlers-Danlos Syndrome, protocol number X110614011. My name is Sam Bailey and I am a genetic counseling student from the University of Alabama-Birmingham. For my graduate project I am studying the needs of individuals with EDS in order to help health care providers meet these needs.

Please contact the link below if you are interested in volunteering to complete a quick survey about living with Ehlers-Danlos syndrome. It will only take 15 minutes of your time. Please take the time to let your voice be heard!

Ehlers-Danlos Syndrome and Fertility

The purpose of this anonymous survey is to determine how often women with EDS experience menstrual disorders, reproductive problems, infertility, or early miscarriage, so we can hopefully update the last published survey regarding EDS and fertility (1994/5). It would be most helpful to have as many responses from women as possible, including those who do not have EDS (spouses, friends, family, etc.), as non-EDS respondents would provide a non-perfect control group.

The survey can be found at: https://www.surveymonkey.com/s/98KF9QL.

Do you have poor sleep and EDS?

THIS PROJECT IS CLOSED.

We are trying to characterize the frequency and patterns of poor sleep, restless leg syndrome (RLS), fatigue, and pain in those with EDS. If you are at least 18 years or older and are interested in participating, please follow the link to complete a survey about your sleep patterns, RLS symptoms, pain, and fatigue. The survey should take approximately 10-15 minutes. Thank you for your participation. Survey closed.

Non-Vascular EDS and Pregnancy Study

THIS PROJECT IS CLOSED.

We are trying to learn about what pregnancy was like for women with a non-vascular form of EDS.

Chronic pain management clinical trials for pediatric patients

If you are a parent with a child that experiences chronic pain who would like to know more information about pediatric chronic pain clinical studies being conducted, or a healthcare professional aware of pediatric patients requiring analgesia who might be appropriate for and interested in participating in clinical studies, please contact Purdue Pharma L.P.'s Medical Services Department. Contact details for the Medical Services department are as follows:

Email: This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
Phone: (Toll-Free) 1-888-726-7535; Option#1
Business hours: Monday-Friday 8am-5pm EST (USA)

Note: These clinical trials are not endorsed by Ehlers-Danlos National Foundation.

Elephant Project Case History Research

My name is Sarah Leach. As I have mentioned to many of you already, I have spoken on two occasions with a Canadian geneticist, Dr. Alasdair Hunter (Ottawa, Ontario), about the fact that more and more people are being diagnosed with Autonomic Dysfunction (POTS, NMH, etc.), some form of Hereditary Disorder of Connective Tissue such as Ehlers-Danlos Syndrome, and a Mast Cell Disorder of some kind.

At Dr. Hunter's request, I have agreed to collect case reports from people with the triad of diagnoses/conditions listed above. I have written a suggested format for collecting the information; the italics are intended to be replaced with your information. Click here to download this Microsoft Word template document.

Click here to read more about this project.