Need Input - Surveys
 

As the only independent internet support group primarily for bc survivors who are HER2 positive, we are approached from time to time to host surveys and studies on our website. Some of these surveys may provide compensation to either our members or to our group.

I need some input from our members in order to formulate guidelines for these surveys.

Regards
Joe

How can we help?

If it would help the site and not harm or be disrespectful of the members, I'm all for it! ma

I don't know how you would define this, but I'd not want to participate in a survey where the main goal was to market stuff.

I would be in favor of any survey or study that would assist in the development of medications, treatment of side effects, or enhance QOL for those stricken by this disease. I would not want to promote any surveys or studies that are purely marketing tools.

I'm game, given I know what it's for ahead of time.

I'm in joe
 

if it will be of help to someone..

Joe
i agree that if it benefits us or the site, I am all for it.

I am in for a survey also.

Yup, let me know what you need.

I'm excluded from many surveys because I don't live in the States but if I can help I'm happy to!

Should we check with the state attorney general's office first to be sure the company has not gotten any complaints? Is there any member on this board with legal expertise who can help with the issues?

I would be happy to be in a survey , if it would help someone..what info do you need. I am applying for one now and want to see what is the information. that you might need.
Joe, if you need some help please email me.. thanks to you and this site.. Charlotte

Sign me up!

If it will help other Her2 woman, & or benefit this site in anyway I am open to it. Anything for a good cause as long as its not for marketing as Chrisy & Sassy already said. But other then that I have no problems with it.

Chelee

I'll be happy to help with anything for this site - the best resource I've found so far for HER-2+. Thank you Joe, for all the work you do to make this possible.

i'd help any way i can!

Count me in Joe - thanks!
Blessings
Hermiracles

I would be happy to participate in a survey -- love to share my opinions! ;-)

I would also be glad to do a survey.

I will participate too.

Yes, if it is to further BC advocacy, treatment, research, etc. I am all for it!

I am happy to support this effort and participate---let me know

It sounds like there is much interest in responding to surveys, etc. that are designed to help learn more and better treat our disease (rather than surveys related to any kind of marketing). Any research coming out of a major organization where research is routinely conducted (e.g., university, medical school, hospital, etc.) would be required to go through an extensive review from the home organization's Institutional Review Board (IRB). Approval from such a board is really a necessity for moving ahead with research at major organizations. At my university, for example, we can not so much as collect interview data from participants without going through the IRB and gaining approval. So, if someone approaches our group, our webmaster or someone from our board should be able to find out if the research has been sanctioned by the organization's IRB (and perhaps check that directly with one phone call). We want to be able to support research that has been scrutinized carefully for ethical considerations but probably not support research that has not been examined internally as to purpose/ethics, etc.
karen