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MRF Clinical Trial Finder

Forums General Melanoma Community MRF Clinical Trial Finder

  • Post
    Shelby – MRF
    Keymaster

    The Melanoma Research Foundation has partnered with EmergingMed to offer a free, confidential, personalized service that helps melanoma patients navigate clinical trials.  Online or by phone, customer service representatives will help you quickly search for clinical trials that match your specific diagnosis and treatment history.  Learn more about this new service by following this link: http://www.emergingmed.com/networks/MRF/  ..  

    The Melanoma Research Foundation has partnered with EmergingMed to offer a free, confidential, personalized service that helps melanoma patients navigate clinical trials.  Online or by phone, customer service representatives will help you quickly search for clinical trials that match your specific diagnosis and treatment history.  Learn more about this new service by following this link: http://www.emergingmed.com/networks/MRF/  ..  

    It is our hope that this partnership will result in melanoma patients learning more about every possible treatment option available to them.

    Shelby Moneer, MRF

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  • Replies
      dian in spokane
      Participant

      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

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      dian in spokane
      Participant

      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

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      nickmac56
      Participant

      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.

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      nickmac56
      Participant

      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.

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        Jerry from Cape Cod
        Participant

        Nick,

        I have to agree.  I tried it last night and found that you are forced to call the provider to get details.  Why add another layer to the mix.  clinicaltrials.gov is fast and allows full searches, filtered by any number of options AND it gives contact information for the trial centers.

        I read through the privacy statement and they will sell aggregated population infomation to interesting parties.  Supposedly they will not release personal information or contact info.  The concerns I have with this are obvious.  When you deal with true medical professionals you have the HIPAA protection, here you have a commercial privacy statement that can be modified.

        The information used by this businessa is gathered from clincaltrials.gov and won't be any better or worse than what's already available.  It just gives a business a reason to gather information on cancer patient populations and collect fees.  It gives the MRF something to brag about, similar to the very pretty job they did of banging up the MPIP community.  But it Sure is Pretty.

        JMHO

        Jerry from Cape Cod

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        Jerry from Cape Cod
        Participant

        Nick,

        I have to agree.  I tried it last night and found that you are forced to call the provider to get details.  Why add another layer to the mix.  clinicaltrials.gov is fast and allows full searches, filtered by any number of options AND it gives contact information for the trial centers.

        I read through the privacy statement and they will sell aggregated population infomation to interesting parties.  Supposedly they will not release personal information or contact info.  The concerns I have with this are obvious.  When you deal with true medical professionals you have the HIPAA protection, here you have a commercial privacy statement that can be modified.

        The information used by this businessa is gathered from clincaltrials.gov and won't be any better or worse than what's already available.  It just gives a business a reason to gather information on cancer patient populations and collect fees.  It gives the MRF something to brag about, similar to the very pretty job they did of banging up the MPIP community.  But it Sure is Pretty.

        JMHO

        Jerry from Cape Cod

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      Charlie S
      Participant

      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.

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      Charlie S
      Participant

      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.

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      KatyWI
      Participant

      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

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      KatyWI
      Participant

      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

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