Home Forums Melanoma Diagnosis: Stage IV Input sought: clinical trials, what patients want?

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    I have been invited to participate in the Patient-Centered Clinical Trials Summit at the Partnerships in Clinical Trials Conference. I believe that it offers a unique opportunity to present a patient perspective to key stakeholders in both the Pharma and CRO sectors. I am looking for your input on the both the design, conduct, financing and analysis of Clinical Trials and the larger question of requisite changes in the whole Translational Research Paradigm. I also anticipate posting a version this request on several other melanoma advocacy. oncology and participatory medicine sites.

    At this point It is my intention to begin with my own experience and how I got involved in the subject, to quickly summarize the areas where the interests of patient and the stakeholders present coincide, and to move on to the areas of conflict and the possibilities for resolving them. I am considering using the newly announced BMS Phase 3 trial (NCT01721772) of anti-PD-1 ( BMS-936558) as an example.


    Hi Alan, I underwent a clinical trial for stage IV melanoma (TIL at NCI) and I also work in clinical trials (patient recruitment). If I can offer any assistance, please let me know!


    Thank you for reaching out to the community about this important topic. Some changes to the clinical trials process I would like to see are:

    1. Getting 2 or more drug companies to collaborate on clinical trials. Company A makes a pretty good drug; Company B makes a different but equally promising drug. Combining or sequencing the 2 drugs may turn out to be great, but the drug companies won’t play nice together–neither one will collaborate with the other on a clinical trial. This impedes research progress and works to the detriment of patients.

    2. Getting all stakeholders (pharmaceutical, academic, and government researchers) to share their raw data. Thousands of cancer patients have their DNA sequenced for one reason or another. All of these patients either respond or fail to respond to a given treatment. If all researchers had access to each patient’s DNA sequence as well the data about how they responded (rather than just reporting statistical analyses), we could make very fast progress in understanding the molecular mechanisms controlling malignancies and could tailor treatments to really cure each patient’s cancer. That way, each patient would have a very high probability of success rather than hoping that this or that treatment “might” work. This would not only reduce cancer progression and unnecessary side effects, it would also save our health care system buckets of money because expensive resources can be focused where they will do the most good. The CDC has been trying for years to get all state and local health department computers to speak the same language so they can share public health epidemiological data. Perhaps the CDC would have some good ideas about this.

    3. Open up more trials in more locations. It is frustrating and discouraging to read about a great new clinical trial, but you don’t live near any of the sites so you can’t take advantage of them. It is also frustrating to learn that it may be years before a clinical trial is completed and analyzed because it will take that long for the few centers to recruit enough patients who meet the criteria. I suspect that a major impediment is the complexity and expense of setting up clinical trial coordinating offices and filling out all the forms and paperwork for each trial and each patient. Could that function be centralized? Or the costs subsidized? Why only have 3 or 5 trial sites, usually in large cities? You could have 100 smaller sites all over the country that could recruit more patients faster, serve their populations better, and deliver a broader demographic, genetic, and economic data set.

    Again, thanks for asking!


    Alan, could you post this request on the MPIP, too? http://www.melanoma.org/community/mpip-melanoma-patients-information-page


    I continue to wonder why it seems like it is up to the patient to find a clinical trial. Before Don was diagnosed I thought the oncologist would tell you. They know the ones they are involved with & our new onco will do a search for you but our first just said one option is a clinical trial, not how to look for one or really much info at all.

    Also the cost of travel because of the lack of sites for trials.

    Thanks, Karen

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