Hi violet976 , My daughter was accepted and we dispatched DNA samples. I don't think its a case of testing positive the research will take a look at sufferers DNA and medical history to try and find a common link. When they find the common link they can target the drug research.
There is probably more than one gene or variation mutation that can have an impact on EM. The drug companies appear to be very keen on EM research as it provides the key to non opiate based pain killers and this is the ultimate cash cow for them.
This is probably a good thing for all EM sufferers and hopefully they come up with something in the very near future.
I got my results from Xenox yesterday. Really surprised by the results. I thought this would solve the issue for me of Primary versus secondary EM. They found a mutation in a part of the 1.7 SCN9A gene. A mutation that they originally classified as a cause for EM. They have since reclassified that mutation and they don't really know it's significance at this time. It may play a part in EM but if it does they don’t know what it does. (Now it seems they believe the 1.9 sodium channel plays a part in EM too.) Results sent to my Doctor and then to me. About 3 1/2 months to get results.
I had another question for those who enrolled in the study. Did anyone enroll who did not currently have a primary care doctor? If so, where did you opt to have your results mailed to?
I would definitely like to receive the results via the clinic I normally go to for medical care. However, it's been a few years since I've been seen there and so I do not have a primary doctor on file (it's a community health center). I called to try choose a primary doctor, but without scheduling an appointment the best they will give me is the name of a physician assistant on their staff to have the results sent to.
I emailed xenon to see if this will be acceptable, but if not, are there any alternatives I'm overlooking? I would really prefer to not pay for an appointment simply to re-establish an existing relationship with my clinic, instead of re-establishing when I get my results and actually have a need to go in.