HER2 Support Group Forums - View Single Post - patient centered her2+ breast cancer research--PLEASE VOLUNTEER to donate your tumor

AlaskaAngel · 12-24-2007, 11:58 AM

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

12-24-2007, 11:58 AM	#43
AlaskaAngel Senior Member Join Date: Sep 2005 Location: Alaska Posts: 2,018	What goes in, and what comes out (the big picture) 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