Research support idea

[Merridith]

Hi everyone:

Since I have been diagnosed with cancer, I have participated in several research projects. They have mostly been non-physically intrusive research stuff such as "How did my cancer affect my income?" "How did cancer change my career outlook?" "Did chemo affect my cognitive processes?" "Does performing a certain level/type of exercise improve ability to tolerate chemo?"

Many of these research projects are produced by university students. A couple were national/international studies.

They all have one thing in barrier in common. It is very difficult to find participants because of the medical privacy laws. They can't even approach us to ask even though I'll bet many of us would be willing to give them a hand.

I found most of my trials by looking at postings on a board at the hospital when I went in for treatment. But this is a very clumsy way for a trial to acquire participants.

A bulletin board notice can't reach people who are not in treatment. Or those that don't read the bulletin board. There are lots of exceptions.

Here is my suggestion:

Would it be possible to create a registration list of people on this site that would be available/willing to participate in trials that researchers could access? If the list was set up correctly as a data base, researchers could quickly pick out those people who's parameters fit what they were trying to examine and then they could contact them. It could include those that are willing to just participate in interviews (either live or by email) all the way to those willing to donate a vial of blood or share medical records.

This would serve two purposes. One is that it would create a feild of participants for researchers to quickly draw on to feild test a hypothesis before going to the full blown serious/expensive double blind test of a hypothese.

The second would be it would give encouragement and an easy resource for those budding researchers who are just now university students. It is during those early formative years that those students are picking their specialties and where they would like to concentrate their research - quite often for the rest of their lives. Giving them a positive experience and easy resource could peak their interest and careers in our (HER2) direction.

I thought that this board might be a good way to organise this resource.

Any comment or support for this idea?

Regards,
Merridith

[vpfeiffer]

Merridith--
That's a great idea! I can't think of any women with breast cancer or who have had BC who wouldn't be willing to have their names added to such a list!!

Are you volunteering to creeate it :-)

Val

[imported_Joe]

Meridith,
The HER2 Support Group has always encouraged participation in all forms of clinical research, surveys and trials. We have several studies currently listed on our clinical trials page. These are not trials but scientific studies using accepted controls and standards.

Two of the studies are on internet support groups and their importance to the patient. I highly reccomend participation in either one or both of these studies.

Also, if you wish to contact these students and invite them to recruit subjects from our website feel free to do so.

Warmest Regards
Joe

[Janet/FL]

Hi Joe
I did contact one study regarding Internet support. However, since if I were in the control arm of the study I had to agree not to participate in support groups on the Internet, I declined to be considered for the study. The contact person said others had turned down the study for the same reason.
I wouldn't give up my groups including this one!
Janet/FL

[*_Joe_*]

Janet,

That should send them a message.

Regards
Joe

[Merridith]

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