patient centered her2+ breast cancer research--PLEASE VOLUNTEER to donate your tumor

[Lolly]

"...Of course we need to make sure that if and when material will be collected, it will be via appropriate means, i.e., transferring it from one institute directly to the other, to allow high fidelity of the material..."

Lani, should I wait to ask for my slides to be sent from the hospital where I had my initial surgery performed? I checked last year and they told me their policy was to store for 10-15 years and I can check again to make sure this policy is still being followed. Seems like it might be the "safer" bet at this point until we know more about the criteria for transport.

<3 Lolly

[Lani]

I read the request here for someone going to SABCS to see what we could do to speed up research on her2+ breast cancer by donating tumor specimens and the access to medical records information.

I had NO IDEA, not being in the field, of what is entailed if a formal registry is started, or what legal issues are involved (see my post on Supreme court case of whether the university or the researcher or the patients owned their prostate cancer specimens!).

This does not appear to be a mom-and-pop operation but rather on an industrial-scale, which both disspoints me and concerns me.

All here I am sure had and have the best of intentions.

So why do things seem so complicated?

I approached those who seemed to be passionate about the her2 research they were doing, hoping they would know what to do.

I am a fish out of water here.

We may just not have found the right people here. There is more research to do, asking those who have done/are doing something similar, to learn from their experience. Smoozing with the right sorts (Joe has some very constructive, informed suggestions having encountered many of the movers and shakers in the breast cancer advocacy world)

This skills for going forward are not necessarily mine (mining a multitude of published articles for information useful to a few, filtering out the promising ones, asking pertinent, if not insightful, questions).

After the holidays, I hope several here will pick up the gauntlet and run.

They will not be alone, as I am not backing out.

Wishing you all happy holidays and all the best in 2008!

The bottom line: the specimens aren't going anywhere yet, but I recommend those interested locate their specimens, find out what the institution plans to do with them (ie, toss at 5,10, yrs etc) and either get involved in the project or wait until someone who is suggests what best be
done.

[AlaskaAngel]

Hi again from Alaska,

We all want to do something to help move things along faster. I'd like to see whatever we do with our samples make the most difference possible. That might take a little more time for checking out possibilities, but it also allows the opportunity for consideration of the broadest range of suggestions.

Here at HER2support we have international participation online, a HER2 think tank that has no borders. How do you feel about that? Is that an important part of this project? Are you interested in trying to encourage the participation by HER2s around the world? Or should the focus realistically be more limited? Should it be based with a couple of chosen institutions or researchers or specific research proposals, or countries?

In creating a registry, it might be worthwhile to build in the possibility for expansion of wider data collection from the beginning so that it isn't more difficult to decide to do that somewhere down the road.

That would include having to consider any challenges involved with differing legal requirements in different locations. If there were no precedent, it could be more difficult. But there IS at least one. Somehow, someone with vision was able to find a way to collect tumor samples and blood samples and patient histories on a worldwide basis as prerequisite information for the TEACH trial. What would need to happen to be able to create a registry similar to that?

AlaskaAngel

[Donna]

whenever and however this gets put together, let me know, I would be glad to participate.

Thanks so much!

Donna