this has just been released by TEA ,
PLEASE NOTE: Bens Friends and TEA are not involved in this study and cannot provide any opinion or advice regarding this study. We are just sharing this information as posted on TEA website/ facebook. Further inquiries about the study should be directed to Xenon Pharmaceuticals Inc.
Xenon Pharmaceuticals Inc.
■■■■■■■■ Gilmore Way
Burnaby, British Columbia
Canada V5G 4W8
ANNOUNCEMENT: Xenon Pharmaceuticals Inc. is inviting people with Primary Erythromelalgia to take part in a genetic research study. Individuals who meet the study criteria will provide a saliva sample for genetic testing and are given the option to receive their genetic results through their physician. There are no costs associated with taking part in this research study.
To read more, please visit http://www.xenon-pharma.com/em-study/.
Just reposting this guys, we have had quite a few new members past month. Just take the screening test. Its free. Might give you some more information about your EM even if you are not put forward (ie: do not fulfill inclusion criteria). Its worth a shot!
I am in the study with mild EM currently in near remission. Just filled out a questionnaire and a consent form and they are going to mail me something to spit in.
Don in Austin
I filled out the questionnaire and just received an email that I have been accepted.They are sending me the saliva testing supplies. I am a bit surprised because I have other issues but nothing that can be directly linked to the cause of EM.
I am so happy for you Don in Austin, Texas! May I asked what has helped you into near remission? Thank you.
First ;let me say, as bad as it was during the peak of flareup it was nothing like cases I have seen or read about online -- pretty much confined to my toes.
Perhaps coincidental remission, perhaps cause and effect, who knows? But what I did was start taking about 600 mg of magnesium supplement daily. I am also staying of of tight, hot shoes and wearing sandals or some new relatively light, airy work shoes I got yesterday.
How long did you take magnesium before seeing results? How long have you been better?
I know I have natural fluctuations in my severity so it is difficult to tell when something is truly helping unless it has been better for some time. I hope it keeps up for you. It is always encouraging to know some people are finding something that helps.
2-3 days and have had no major flareup since. I was having daily flare-ups for about 3 weeks, peaking out regularly mid-afternoon. Cause and effect is certainly hard to prove! But magnesium supplementation is so benign I will keep doing what I am doing until/unless I am forced to look for something else. Aspirin or ibuprofen did not help.
Don in Austin
Alina, how long did it take for Xenon to notify you of your acceptance? I got a “thanks for applying; we’ll contact you in 2-3 weeks” email right after doing the screening survey, but I’ve heard nothing since then.
Xenon inform that it is around 2-3 weeks to hear. Some folks waiting 6 weeks so dont worry. Please just spread the word.They got back to me in 2 days saying 'thank you' , you will hear something in 3 weeks or so. This is free- worth a shot.
Hi NolaSue . It took LITTLE OVER 1 WEEK FOR ME TO GET an email notification of my approval. At that time they said they would send the packet with the test supplies but I have yet to receive that. I got the same original email saying they would get back in a few weeks but for me it took a little over 1 ...maybe 10 days.
If they don't think you qualify I am sure you will receive a letter stating that so I would just give it more time.
Think country might play a part in testing kits/letters arriving. I wouldnt worry. If you are picked its a bonus- right. You may discover something..We dont really know what they looking for. If you are taking a certain medication you may be excluded. They are also ultimately looking for a genetic link. I work in clinical research and its a very narrow research criteria. They only want 200 participants internationally.They are phoning some people to ask more questions. Im sure you will hear soon.
I got my acceptance today. Woo Hoo! Now to sit down and read all the paperwork…
It was 2 days after my acceptance email that I received the email with the attached forms to be printed, reviewed, signed and scanned to be returned to Xenon. I don't remember the date I received the saliva sample kit, but it was a least a week before I received the kit. This was all at the end of last year (2013). Xenon received my sample on Jan. 6, 2014. I received my results form Mar 20, 2014. I am negative to the SCN9A variant.
Pat in NH
Alina, how long did it take for Xenon to notify you of your acceptance? I got a "thanks for applying; we'll contact you in 2-3 weeks" email right after doing the screening survey, but I've heard nothing since then.
I was selected yesterday. I filled out the questionnaire 2 weeks ago. I wonder if any of the people who have been selected to participate already know if they have primary EM? If so, how was it determined that you do have primary? Just curious is all. I am looking forward to whatever answer can be discovered by this study. My best wishes to all the other members in this group as we head into the warmer months here in the states. I am not looking forward to them that's for sure. Hang in there people, with any luck at all, perhaps this will be one of our last summers of misery.
Thanks for posting, I just signed up!
You are welcome. Please spread the word. Its free! God bless x
I am happy for you NolaSue. It is quite a but of paper work I know!
Any opportunity to get a better understanding of why this is happening is a plus. Even if just to find out it isn't genetic that is one more thing to check off the list hopefully narrowing it down to 1 some day Or maybe we take the fast track and find out it is genetic.
Thanks for the posting! Also just signed up, keeping my fingers crossed!
Xenon are now taking approx 2-3 weeks to email participants that fulfill research criteria. Relevant paperwork needs to be signed, returned and then you will be sent saliva kit.
Good luck everyone