Biggest Decision Making Factor to Joining a Clinical Trial

Although we are looking to recruit individuals for a prostate cancer clinical trial, that is not the focus of this post. I'm more so interested in learning what factors do or would you consider before showing interest?

E.g. location, pharma company, benefits, reviews.......

Any feedback would be greatly appreciated.

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  • If my doctor recommended it.

  • What would the benefits be, if a successful outcome is achieved? What are the risks to my health? Your term, "reviews" ; what evidence can you provide on the worthyness of this trial?

    Rich

  • That it is recommended by either my own provider or a very reputable leader in the field. I look for backing of a known academic center, not just a hired gun paid by a big pharma company.

    There has to be a direct benefit to me and other prostate cancer patients. I would never participate in a trial without letting my own medical providers know and weigh in on my decision.

    I have growing disdain for the drug companies and the price gouging for all cancer care irregardless who is paying.

  • How much travel time is involved, how often I would have to visit the clinic conducting the trial, what other treatment options I might have to forgo. It's all about evaluating the tradeoffs.

  • I agree with DenDoc

    I am currently in a study (AS, the path I am following). How would a new study effect or negate my current treatment. How does the study impact (if at all) my current situation. What previous work has been done to study the drug or treatment method or whatever?

    I would never consider a study with talking it over with my current providers.

  • Eligibility, distance, frequency of visits, (is treatment only available at clinic, such as injections), known side effects, open label. Went thru one trial this last summer and the cost ($$, physical and mental) of each trip wore us down.

  • I have to re-iterate what I said previously. You would think that a drug company would stand behind a contract with the patient on their study drug. This was not the case in my situation. I have been off the study since March, and not a word about any follow up care. Not only did my Oncologist at the time throw me out of the practice, he never did any follow up as well, which is required by law. Don't trust Aragon Pharmaceuticals. They don't care, obviously.

    Joe

  • Thank you all for your feedback. It is greatly appreciated.

  • Most Clinical trials today are working on Immunology techniques, and anti-viral drugs or protocols. The First thing they want to know is if you have been Gene Mapped, so your Gene Mutations are identified. Suggest going to Foundation One--Call and get Mapped. Medicare, makes it free, I understand some of costs are covered by Insurance plans, if you do not have Medicare--I am on Medicare--so my mapping was free---Your report also indicates what drugs available today whether FDA approved or not are having success against your mutations, and where the Clinical trials are, that are working on the mutations you exhibit. Many trials can be done locally--where your Oncologist is approved to participate--and you do the protocols locally, and the reports/test monitoring results, gets reported to the home base of the Clinical Trial.

    Nalakrats

  • I am interested in gene mapping but live in a pretty remote area in SE Washington, would I have to go to a big city for this or could a local path lab do the test?

  • Just go to Foundation One on their Web Page---get the 800 number and call. All you need is your Doctors approval, on the forms you can print out from their site---they do all the rest. They work from the Prostate, if taken out by surgery--which is usually stored for 10 years in wax. If you had radiation and still have your Prostate, then they would need to work from your blood. This can all be done locally-----within 3 weeks you get your results--and the Genes that Mutated, along with which current drugs would be effective, as well as a list of Clinical Trials Looking for people with your Gene Markers. If on Medicare, it is paid for--Insurance is based on Company and Policies.

    Nalakrats

  • What are the side effects, travel distance, and would the drug company stop providing the drug to me when the trial ended and I were still receiving a benefit from the drug.

  • I would have to be convinced I was made aware of all of the currently known risk factors

  • I try to join trials if I think the trial is good for me. It helps if I have seen the investigator on YouTube, if I like the hypothesis he/she is trying to prove or disprove, and he/she seems committed to the work.

    Of course, distance and cost have to be workable.

  • I would want to know how much money is the doctor getting for each patient enrolled in the trial?

  • Hi John438, visiting projects.propublica.org/doc... is a good start.

  • What is the evidence of the the safety of the treatment? What is the risk of harm?

    Studies, articles, YouTubes?

  • I think everyone above covered all the typical concerns. Certainly it should have some benefit for me and the side effects should clearly be identified. In then end I hope my participation advances research so that other men don't have to experience what I have gone through. My trial requires all scans be performed every 12 weeks which I feel is an added benefit I would not get if not in the trial.

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