"The Brain Tumor Virtual TrialTM is a new concept in collecting and analyzing outcomes data for brain tumor patients. We collect information from brain tumor patients - or their friends / family, over the internet. Participants are not told what treatments to do - we just record and analyze the outcomes of the treatments you and your doctors decide to try. The idea is to enable us to quickly identify which treatments or combinations of treatments look the most promising. We will then perform a traditional multi-center study on the best combinations of treatments."
Click here for more details and to register.
Stephen, what if we are thinking of trying a substance that is illegal in our state? Will this registry be available to law enforcement? We would like to participate and think this is going to be an incredible resource for those of us trying to get "standard-of-care" to reflect Ben Williams' "carpet bombing" paradigm. But there is just that one, small glitch. Could we, perhaps, register under a pseudonym if we do decide to add that particular "bomb" to our arsenal?
ReplyDeleteThe New South Wales Government has announced a clinical trial of the medical use of Cultivation Cannabis Medicine
ReplyDeleteThe Musella Foundation is worth strong support, they do a lot of good, are very helpful to research and GBMrs. Their virtual trial is genius and we all should be using the virtual trial and contributing.
ReplyDeleteI agree and so I called Al Musella and spoke to him about anonymity for people who have added CO to their cocktail but are in illegal states. He promised to think on it and get back to me. I'll let you know what he says.
ReplyDeleteAl Musella's reply:
ReplyDeleteHi
What about listing it as CO. Nobody would really know what that is unless you are taking it, And you could always say that was short for coenzyme q10.
The people who would be able to hack into a website would not be medical people and would not think of trying to figure out if a few patients were taking something illegal in their state then try to take advantage of them. They are looking for social security numbers (which we do not store!), credit card numbers (again - we never save those to disk!), or username/password combinations.. which they can get but we use patient ID as the username. We assign that. So the chance of you using that same ID as a username on your banking website for example, is 0. So even if they get the username and password, it won't get them anything they can make fast money on.
Our database is over a gigabyte of information spread out over 300 different tables. To be able to piece together that you took a particular treatment would require them to first find the table with the name of the drug.. to get the drug id.. Then they would have to find the table that links the updates which only has your patient id and that drug id (and date, dose, etc).. then find the table that converts your patient id into a name. Some of that is encrypted so if they just have the database table itself, they couldn't get anywhere.. but if they hack into the server directly and find the keys, then they could, but the amount of work involved isn't worth it when there is so much lower hanging fruit.
If you are still worried, then change the address to a place in NY, and misspell your last name [this part omitted by SJF], but keep it close so when reports are checked they can find the person. We do not usually verify the addresses.
And keep in mind the risk / benefit ratio. Participating in something like this can tell us if something is working or not working. We can not tell if it helps or hurts a little but we can tell if there is a big improvement. Without something like this, your experiences are wasted, forcing others to make the same mistake or forcing them to miss out on something that works.
Years ago, we identified that using temodar at the same time as radiation worked better, and our members started using it about a year before it was published.. saving lives.
Later Al Musella sent this...Maybe add something like set up a new email address for brain tumor related email. And never use the same password on multiple websites.
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Thoughts? Comments? - SJF
I agree - last thing to worry about.
ReplyDeleteNot for me. I do worry about it.
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