EDS Research Projects from the National Institutes of Health
ClinicalTrials.gov: Ehlers-Danlos Syndrome
Pain Control Methods in Use by Patients with Ehlers-Danlos Syndrome and Pain Control Effectiveness
Karen Arthur is recruiting participants to a study titled “Pain Control Methods in Use by Patients with Ehlers-Danlos Syndrome and Pain Control Effectiveness.” She is looking for participants who are 18 years old and older and with a diagnosis of Ehlers-Danlos syndrome of any subtype to complete a survey about EDS diagnosis, pain, pain management, and life satisfaction. By doing this research, Karen hopes to determine patients’ preferences for pain management. Participation in this study is voluntary; participants are free to withdraw at any time or refuse to participate without penalty.
Please go to http://cmhc.appstate.edu/eds for more information.
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.
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:
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.