CLOSED: Ended 12th December 2014. New Xenon research :THE EMpower PROJECT. Recruiting participants now

General
1

Hi Guys,

Xenon has informed us that they have a new 6 week study called 'THE EMpower PROJECT'. (ends December 12th 2014)

Burning hands or feet are often debilitating symptoms with few treatment options available. The EMPOWER Project is looking to change that – and you can help!

By sharing your unique insights through this online research initiative, you can help raise awareness about your symptoms and guide researchers to develop new diagnostic tools, clinical studies, and potential new treatments options for burning hands or feet.

This online questionnaire is designed to help researchers gain insight into what it is like to live with burning hands or feet – from where and how often you experience this pain, to how you are currently treating your symptoms.

https://www.empowerresearchproject.com/

PLEASE READ PARTICIPANT INSTRUCTIONS AND OTHER IMPORTANT INFORMATION CAREFULLY.

1) Purpose of this project is to understand the prevalence of those with the "classic" EM symptoms, which is burning/painful extremities, and establish the geographic locations of these individuals so that Xenon can identify potential 'set up sites' in the event that they pursue a clinical trial.

Note: This is an epidemiological project NOT an in-depth study on EM .

2) If you choose to to participant you will be asked to complete an online questionnaire. No other testing /tests are involved .


3) The online EMpower questionnaire consists of two parts:

Part 1 - consists of 6 questions. The majority of participants will be required to complete this quicker version. Despite only requesting a small amount of information from you, it is actually the most critical piece in achieving Xenon's main goal.Please note it is NOT a screening question.

Part 2 - consists of 45 questions . A few participants will be asked to complete this longer version which requires more detailed information .


4) Web logic programming determines which participants go on to complete Part 2. This is randomly generated and not because of any screening, or the web system thinking you do not have EM.

Note: Majority of people will have completed their contribution to the EMpower project in Part 1 of the questionnaire. ( LWE mod team all completed the quicker version :-) )


5) On completion of the questionnaire ,Xenon will ask participants for permission to keep and use their information for research into pain. If you consent then you need to answer YES. If you answer NO , the web system automatically deletes your contribution.

 6) Aside trying to understand the prevalence of EM, Xenon hope to identify EM sufferers who are unaware of the fact that they have EM ,and who have not heard of the EM syndrome.Therefore, to minimise ' confounding data' by attracting non EM sufferers , only the classic/most common symptoms representing EM were chosen to promote erythromelalgia in Xenon's online advertisements and questionnaire web page.

7) Study ends 12th December 2014 so please spread the word.


PLEASE NOTE: Ben's Friends cannot provide any opinion or advice regarding this project. Further inquiries about the EMpower project should be directed to Xenon Pharmaceuticals Inc.■■■■■■■■■■■■■■■■■■■■■

Please get involved and help EM research take a step forward!

2

I didn’t get beyond the screening questionnaire. Evidently I am not a suitable candidate:-(
Trying not to take it personally:-)

3

I didn't get "in" either. :)

4

I wasn’t selected for the full survey either but I think this is was Mads told us about. The vast majority will only take the quick version and the computer randomly chooses who continues on to the more extensive questioning.
Thank you for sharing Mads :slight_smile:

5

Yes thank you mads. My gene test came back negative by the way but it is great to know Xenon is researching.

6

I am already a participant. Results from testing will be available in December.

7

I was not selected either...my best to all.

Don

8

I am a little skeptical of clicking a link in a forum and entering all this personal information. Do we e know this isn’t a phishing expedition?

9

Hi Nolasue,

How are you? Mod team were was wondering how you were doing as we havent heard from you for several months.

If it makes you feel less uneasy, I posted the link. We checked it out first as we have a strict policy of not posting or informing our members of anything suspect :-)

If you still feel uncomfortable then obviously please dont participate. You have several weeks to think about it, anyway.

Hope you are 'comfortable'

Big hug

mads

10

I was also not selected, but allowed them to keep my info in case it is of any use.

Greets,

Ben

11

Everyone is selected Ben. It is only the first part that is crucial for study objective. Second part is randomly generated ( e.g. every 25 th or so), but note that this 2nd part is fairly irrelevant as it is not a study wanting detailed information :-).

Its your contribution that counts!

Thank you for participating. If we all take part , Xenon will be able to better understand prevalence in terms of geographic clusters for potential set ups for clinical trials.

And - how are you doing this week? Hope you are 'comfortable'. We have another German member just joined us called Winni , you might like to befriend him:-)

God bless

mads

12

I was selected (which shows its random as I have yet to be diagnosed) and toward the end they asked if I’d be willing to be part of a study and how far Id travel. Maybe this is normal for these questionnaires but hopefully it means they are serious about testing and finding ways to minimize effects of EM.

13

Wow! Keep us to date! How do you feel about this?

Don

14

Great news , Sky. Told everyone its random :-)

As Danza says - please keep the community up to date.

15

We were not selected. Please keep us up to date!
Glad someone here was chosen.