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Research Studies

Click here for a list of research studies and clinical trials currently recruiting participants.

The Erythromelalgia Association (TEA) lists research initiatives recruiting participants with inherited and/or primary erythromelalgia as an information service only. The posting of research studies on this website is not an endorsement or recommendation of such studies. TEA makes no representations or warranties with respect to quality, safety, reliability, qualifications, or desirability of the studies or researchers, and specifically disclaims any other warranties, express or implied.

About Research and Clinical Trials
Scientific research offers great hope to people affected by erythromelalgia. Participation in studies enables individuals to contribute directly to research that may lead to discoveries that lessen the symptoms on all EM sufferers in the future. Not all studies include treatment. Click here for important background information regarding research involving DNA testing (obtained from NORD – National Organization for Rare Disorders).

Before committing to participation in a study, TEA suggests you review all written materials presented to you by the researcher with the following questions in mind.  (If the materials do not address these questions, follow up with the researcher to obtain the answers.)

Why do you want me in your study?

What is the research about? How will this research help in treating or understanding my disorder?

What do I need to do and how much time will this take?

How might this study help me, my relatives, or other people with my disorder?

What possible risks are there to me if I take part?

Could my symptoms become worse during the study? What will happen if it does?

What will happen to me at the end of the study?

What should I do if I want to drop out of the study?

May I get back to you after I discuss this with my family/friend/case manager/doctor?