Hi Val & Joe:
Thanks for your input.
Unfortunately I don't have the technical expertise to create this data base. To carry out the idea, an online database would have to be created in such a manner that the "volunteers" could fill out feilds, but the researchers had restricted access to. The researchers would have to apply to access it through her2support so that nefrarious characters didn't get to dive in.
The questions would also have to be set up by a medical professional and probably a psychologist because those are the two feilds that would be interested in using this data base. I also suspect that parts of the questionnaire might require the participant's doctor to fill it out to ensure accuracy.
Joe:
Although I am aware that HER2support DOES support research initiatives through it's website, this idea takes it a considerable leap further by creating a searchable database of subjects. Something of this magnitude would have to be actively supported by the board, and probably the board would have to use it's contacts to set it up.
One problem that I have thought of has to do with US citizens. Since the US doesn't have universal medicine it could be catastrophic to reveal certain types of medical information online if for instance insurers or an employer were to accidentally put their mitts on it. There would have to be an implicit understanding that a lot of privacy rights in the medical area might be foregone by participating. Therefore it might be useful to create a sub-category of people that would be willing to donate tissue/bodies/filled questionaires post-humously for research in this feild.
One of the main things that I would hope to encourage by the creation of this data base is more research into this area as well as the enticement of young researchers to specialize in searching for a cure.
Consider this: How many good ideas like herceptin have already died on the rack because it was too difficult to get the subjects/funding etc to support it. By utilizing a readily accessible data base it is much easier to spot trends that fit and support a hypothesis. And from there it is much easier for a researcher/small company to get support and funding to move forward.
Please consider this a serious proposal.
I know that in Iceland the entire population without exception is in a medical and genetic data base. It covers medical information for generations back. Companies and researchers come from all over the world to utilize it. It is considered the forefront of any human data base in the world. And because of the enourmous spectrum of data they are closing in on causes and cures of diseases at quantum leaps. In fact a significant part of the government's budget for medical care comes from SELLING the access to this info to companies.
HER2 is in the position to initiate such a revolutionary step. I know of no other disease that has tried this approach. I believe that if we were successful we could get a very significant amount of publicity as well as the benefit of fast forwarding access to a cure for all of us. Utilizing our many international members we could get out the information that such a data base existed into the oncology community and hospitals around the world fairly quickly and within a few years I expect the data base membership could be very significant. In fact, if we were successful, I have no doubt that other diseases would imitate us.
Please consider tabling this idea at your next board meeting.
Regards,
Merridith
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