I've been asked to share this by someone representing a reputable pharmaceutical company working on major treatments for Huntington's Disease (I know which co. it is).
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If you’re helping a loved one who has Huntington’s disease (HD), there’s a private online insights community you may be interested in joining. This password-protected community is designed for the sponsor to learn from and get feedback from caregivers of Huntington’s disease patients. It’s essentially a moderated online forum where caregivers can interact with each other 24/7 and share their experiences and needs, as well as learn from one another.

Communispace has been hired to create this confidential, insights community in partnership with this sponsor (a pharmaceutical company) who is dedicated to improving HD care and providing valuable resources. This is your chance to have your voice heard – your honest feedback can help the sponsor develop relevant caregiver resources.

Privacy: Please be assured that your personal information will be kept confidential and will NOT be shared with the sponsor or anyone else. Your identity and contributions on the community site will be completely anonymous. As mentioned, the purpose of the community is to gain insights into the needs of HD caregivers; there will be so sales or specific marketing solicitation.

Please click here to take a confidential short questionnaire to see if you qualify*.

[www.brandinvitation.com]

*Please note that not everyone will qualify as the survey uses a wide assortment of questions as part of the selection process to ensure the forum represents a diverse population with a variety of experiences. Given the limited size (only the first 125 people can join), we are unable to include all survey participants in the forum. We appreciate your understanding.


The Healthcare Insights Team at Communispace

I sure hope that was a reputable website...submitted my personnal information...waiting to see If I am what they are looking for.

Interestingly, Communispace is one of the companys where my husband worked briefly before his diagnosis. It was a good company run by good people. Sadly, that was a period in his life when Rusty was symptomatic to the point where he could not learn the job quickly enough to pass his orientation period. I'm not blaming them or anything, but just letting you know that I have personal knowledge of the people behind this site and their mission and values seemed reputable at this time.

I shied away from this out concerns of being exploited by marketing concerns and the lack of full disclosure.

Fred Lothrop

After taken the survey, I just heard I quailified to join...But after Fred's comment, I am concerned even though they are offering $30/month

I was chosen also. I'm not going to worry about exploitation. The only personal info they get is your address which is public info. and your e mail address which every scammer seems to have anyways! With the questions they ask on the survey, its seems unlikely it is a scam.

Usually we are the first in line to help, give to, particpate and interact within the community. But, who is the pharmaceutical company; what is the collected information to be used for; who is moderating the new forum; why a new forum when there is HUNT-DIS, the Light House and several others that can be monitored for free?

Always leery of blind data collection schemes.

I took the survey and qualified as well. Our motto is if it might help and it can't hurt we participate. I feel confident that Marsha wouldn't lead us astray.

I took the survey. I haven't heard, so I guess I did not qualify. I am in healthcare, so perhaps that disqualified me.
Patty

Has anyone else here participated in this? I have but don't think I will continue. This is not really
research which would be important in finding a cure, it is more research to help market xenazine
(tetrabenazine). The project is obviously funded by Lundbech (their emblem is on the top right of the home page.) Lundbech is the manufacturer of xenazine, For those who are unaware, xenazine is used to
control chorea. Every survey, discussion, project, etc focuses on chorea. There is no discussion of any other problems associated with HD. Quite frankly, I'm a bit familiar with marketing surveys and this is
one. It is not a scientific research project. This is not a sinister project. They do not attempt to sell you
anything. They freely give away Amazon credits. But, quite frankly, my energy is limited and I'd rather
concentrate on projects that seek a cure or at least offer hope for relief to the families. The only reason I
write this is that there was a bit of skepticism about this project when it was first introduced. I'd also like to add that the "research" is quite amateurish. The company hired to do it is obviously not very familiar with Huntington's Disease.



Edited 3 time(s). Last edit at 03/26/2013 06:35PM by howard.

Thanks Howard. I thought it would be a more comprehensive survey of symptoms and their impact on quality of life.

I might be on the out also Howard. Ive tried to participate in the special projects just to get the amazon cards. However, for this last one I got feed up with the emphasis on chorea and emailed them that they had no ideal what we were dealing with (to which I am waiting for a reply).

The "group" seems nice though

maybe try to get another card before calling it quits

Joe-
I just read your "me time" on the communispace site. Your life sounds so similar to mine excepting that you are caring for your wife and I am caring for my daughter. I wrote an e mail to Lundbeck and gave blunt answers on a particularly ridiculous survey. This resulted in an email to me where they acknowledge that it is market research for xenazine. Here is the email I received:

"Hello Howard-
I wanted to reach out to you about some of your recent posts in the Caregiver Connection, specifically where you raised concerns and frustration about the focus on chorea associated with Huntington’s Disease. First, thank you for being direct and honest about your perspective and second, please accept my apologies for your frustration.
We set up the Caregiver Connection as a way to do market research and to learn about more than just chorea, although, you are correct in that we focus on it quite a bit since that is where our work focuses. We will also be talking about other topics and if you have something particular you want to discuss with fellow members in the community, you could email us or start your own activity in the Caregiver Connection. Other members are bringing up topics such as traveling, insurance, intimacy and testing.
While we appreciate your active participation and feedback in the Caregiver Connection, we also would understand if this forum is not for you. Even if you decide not to continue participating in this forum, Communispace and Lundbeck value your opinion. Please respond to this email with any feedback, questions or concerns and I will share these with Lundbeck.
Again, please accept my sincerest apologies for your frustration

Sincerely,

Maria xxx

HD Caregiver Connection Facilitator"

Reading through other people's writings, I realize that you and I are not the only ones who find this site kind of silly. I think I'll keep with it because it is so amateurish that it's almost entertaining. Plus, I use Amazon alot as it's easier than going out for things.

Was that in response to the recent request to write "chapters"? I have not heard back from my email.

I was going to put something down for that to get points towards coupon, but the download would not work on my computer.

That wouldn't work on my computer either! It was either in response to an e mail I wrote to Lundbach saying they were wasting money on this project (at $7000/mo. for xenazine I guess they can afford it) or my answers to "your doctor calls and leaves a message on your answering machine that there is a new treatment for chorea."

I suspect the consulting company is not used to dealing with diseases that have such profound consequences for the individual and his/her family nor with a community that is so well informed about the disease. The idea that a doctor would have to tell us about tetrabenazine is kind of funny when you consider that we (the HD online community) have been talking about it with UK friends for many years, lobbied for an FDA decision to be made, and continue to debate benefits vs side effects.

Maybe they'll get a strong message if we started to answer every subject with, a comment about the cost of Xenazine. Thank God we have medical insurance and qualified for a charitable coverage for our copay. My husband's copay amounts to 600 or 700 per month. I would never have been able to afford it. I was told with my income that I just squeaked through....Really? And here I thought we were just making it financially.

Patty-
That's a great idea! Before Lundbeck got their hands on tetrabenazine and renamed it xenazine, you could buy it from Canadien pharmacies for about $150.00 per month. The drug has been around for a long time. I believe it originated in Russia long ago for other purposes. My daughter's cost about $7000 per month and has steadily gone up each year. As you said, if she hadn't qualified for extra help, I would never have been able to pay the copay. Their is no reason that it has to be dispensed by a so called "specialty pharmacy" except to make people rich along the chain. I am going to start mentioning it every time I post until they kick me off (which I'm surprised they haven't done yet).

I am also participating, but I am trying to steer the discussion to real impacts of the disease. Who knows, maybe Lundbeck will shift their focus onto finding a treatment for all of the issues we really need help with. And I'm always interested in finding wisdom from other HD families.

Take care,

Carla

I don't think it will be too long now!

Joe

howard Wrote:
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>..I am going to start mentioning it every time I post
> until they kick me off (which I'm surprised they
> haven't done yet).