Research Project- need help
 

Dear Group Members:



Forgive me for posting on this site, as I am not patient and I realize this online community is strictly for patients. My intent is not to offend anyone. I am posting this message in hopes that some of you might be able to help me with a research project. If you can help me, I will be able to make a donation in your name to the cancer charity of your choice.



My name is Laurie Rider and I work for a research company that helps pharmaceutical and medical companies better understand the patient communities they serve. Our company is called "Over the Fence" which is a reference to the old fashioned idea of talking to your neighbor "over the fence" in your back yard about issues and concerns you may have going on in your life. In today's world this doesn't happen much, but a new form of "over the fence" has emerged, via email and online communities. It is these support communities that we try to talk to.



Our company has been hired to do some patient research on behalf of Wyeth pharmaceuticals. Our goal is to Wyeth to gain better insight into the lives of patients with three specific types of cancers; breast, renal cell carcinoma, and mantel cell lymphoma.



Wyeth has a new drug that is currently in a clinical trial that is designed to improve quality of life for patients in these three cancer types, specifically those patients with stage 3 and 4 of the disease. What they need to learn (from the patient point-of-view) is how patients are currently being treated, how that treatment is working for them and their lifestyle (or not working) and what they wish would be different. Wyeth understands that they need to hear patients’ opinions directly, not just through their doctors (which is how they often do research).



My goal is to develop an online patient community that could help them learn this information through an anonymous an online survey. The types of questions the survey would ask are things like: what type of cancer do you have, what stage, describe the day you first heard your diagnosis- what did you feel and what did you do, where do you turn for support, how would you characterize your relationship with your doctor, what doctors comprise your treatment team, what treatment have you undergone & how well did it work for you, etc.



The survey would be two parts. Each part would take about 20 minutes to complete. The first part would take place during the first week in April, and the second part during the first week in June. I would email you a link to each survey as soon as it is ready. In appreciation of your time, I can donate $25 in your name to the cancer charity of your choice.



If you have a form of estrogen positive breast cancer, renal cell carcinoma, or mantle cell lymphoma I’d like to invite you to participate in this research.

The survey is anonymous and you will not be required to share any identifying information other than your email address.



If you wish to participate, or simply have more questions, please contact me via phone or email at your earliest convenience.



Thank you!



Laurie Rider

208.634.4400

lrider@otfstrategy.com

This sounds legitimate to me, and I would be willing to reply to the survey. What do the rest of you think? Tricia

Sounds Ok to me as well. But I am ER/PR- and she stated ER+

So, I guess that would leave me out.


Vicki

I too am ER/PR negative but HER2 positive Stage III. I wouldn't mind participating in the survey but according to what I read she's only interested in ER/PR+.

I'm also HER2 positive and er-pr-. I hope the donation goes to HER2 support site. This site has been priceless for all of us.

I'd do it too, but I'm also ER/PR-. Maybe she can include us too? What difference would being hormone+ make in a research survey?

I also joined the genetic survey posted here a few months ago - was totally painless - for young BC patients. I'll sign up for any research I can. If any of you want the details of that one, let me know.

I'm in the process of joining the genetic survey for younger survivors. What were your impressions of it?

Thanks.
Susan

Hi Susan. the research study I was part of was really easy - they sent me a kit with 2 vials for blood which I had my nurses draw at my Herceptin treatment. They then sent the same collection kit to my parents, who are in England. It was no problem with them being there. That was it. I think I will have to answer a health questionaire at some point, but I didn't do that yet.

I thought I heard about the study here, but I guess it was from YSC. If anyone else wants the details, let me know and I'll post them here. The more the merrier!

Jen - thanks for your input. I doubt this study will help us, but maybe our daughters or granddaughters.

Laurie - re: the ER+ condition. I was diagnosed 6 years ago with ER+, however, it recurred as ER-. Do I qualify?

Thanks.
Susan