MRF Clinical Trial Finder

Shelby,

thanks for your hard work, as usual. Is this going to be on the site as a separate link, like..maybe under "Patient Resources"? I think it would be a valuable thing to have for new patients to be able to find it quickly.

Maybe you've already placed it somewhere prominent and I just haven't found it yet…

dian

Shelby,

thanks for your hard work, as usual. Is this going to be on the site as a separate link, like..maybe under "Patient Resources"? I think it would be a valuable thing to have for new patients to be able to find it quickly.

Maybe you've already placed it somewhere prominent and I just haven't found it yet…

dian

It's hard to see how this is useful, or any more useful than clinicaltrials.gov.  

I ran this through for my wife, who has had surgery, hormone treatments, Ipilimumab and it offered up 253 possible clinical trials. That's just a collection of stuff that one has no way of assessing.

In the questionnaire it should ask specifically if the person has been in Ipilimumab as it does for the other common treatments. It does ask later about bioligical treatments but that could be a range of things and Ipi is the closest to approval of all the ones out there.

A way to add value and sift the results (the 253 in our case) would be to EXCLUDE any trials which the person wouldn't qualify for based on prior treatment. Many of the Adoptive Cell Therapy trials excude you if you have already had Interleukin 2 treatent (although some include).

A serious omission is not asking any questions about known mutation status – BRAF, HLA 2, etc. That is turning out to be a far more relevent issue in the trial qualifications.

So make this different than clinicaltrials.gov or drop it – add some value.

It's hard to see how this is useful, or any more useful than clinicaltrials.gov.  

I ran this through for my wife, who has had surgery, hormone treatments, Ipilimumab and it offered up 253 possible clinical trials. That's just a collection of stuff that one has no way of assessing.

In the questionnaire it should ask specifically if the person has been in Ipilimumab as it does for the other common treatments. It does ask later about bioligical treatments but that could be a range of things and Ipi is the closest to approval of all the ones out there.

A way to add value and sift the results (the 253 in our case) would be to EXCLUDE any trials which the person wouldn't qualify for based on prior treatment. Many of the Adoptive Cell Therapy trials excude you if you have already had Interleukin 2 treatent (although some include).

A serious omission is not asking any questions about known mutation status – BRAF, HLA 2, etc. That is turning out to be a far more relevent issue in the trial qualifications.

So make this different than clinicaltrials.gov or drop it – add some value.

I tried this and stopped when asked to create a user profile………………..WHAT?, so in partnership with the MRF I have to create ANOTHER user account?????????

 That was a huge red flag; just another data miner in my view, not a viable patient tool to help granulate clinical trial options; which by the way ends up back at clinical trials,gov anyway, which is all ready available and searchable (albeit tiresome) sans registration and a useless phone call.

I saw no value in this "tool", further, it smells more like a business opportunity than a workable patient tool.

It is agreed that the search function on clinicaltrials.gov could be improved, but this "tool" is just another firewall towards that end and not really a vald nor usefull entryway for patient navigation of clinical trials; pointless actually.

I tried this and stopped when asked to create a user profile………………..WHAT?, so in partnership with the MRF I have to create ANOTHER user account?????????

 That was a huge red flag; just another data miner in my view, not a viable patient tool to help granulate clinical trial options; which by the way ends up back at clinical trials,gov anyway, which is all ready available and searchable (albeit tiresome) sans registration and a useless phone call.

I saw no value in this "tool", further, it smells more like a business opportunity than a workable patient tool.

It is agreed that the search function on clinicaltrials.gov could be improved, but this "tool" is just another firewall towards that end and not really a vald nor usefull entryway for patient navigation of clinical trials; pointless actually.

I stopped too when I needed to create a user profile.  BUT, I can see that it might be helpful if someone wanted assistance to navigate the enormous number of trials available.  (It does say that there are customer service representatives available to help.)  If I was not too computer savvy, having a real live human to help might feel really compassionate.  So while this service isn't for me, maybe it will be helpful to someone else.  But then if I wasn't computer savvy, I probably wouldn't be on the MPIP in the first place.  So this might not be the best place to publicize such a service.

On the other hand, I was rooting around one of the links where we've been discussing the brain BRAF trial and found this:  http://www.vicc.org/flowcharts/melanoma4/

It's a flow chart of all the stage IV melanoma trials available at one specific institution (Vanderbilt).  What a way to organize the information!  I wish we had something like this that helped to organize nationwide clinical trials.

KatyWI

I stopped too when I needed to create a user profile.  BUT, I can see that it might be helpful if someone wanted assistance to navigate the enormous number of trials available.  (It does say that there are customer service representatives available to help.)  If I was not too computer savvy, having a real live human to help might feel really compassionate.  So while this service isn't for me, maybe it will be helpful to someone else.  But then if I wasn't computer savvy, I probably wouldn't be on the MPIP in the first place.  So this might not be the best place to publicize such a service.

On the other hand, I was rooting around one of the links where we've been discussing the brain BRAF trial and found this:  http://www.vicc.org/flowcharts/melanoma4/

It's a flow chart of all the stage IV melanoma trials available at one specific institution (Vanderbilt).  What a way to organize the information!  I wish we had something like this that helped to organize nationwide clinical trials.

KatyWI