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How do you get into clinical trial?
Cancer | Last Active: Jun 11 4:55pm | Replies (17)Comment receiving replies
Contact the American cancer society.
It cost nothing. They will ask a few questions about your cancer then look up if there are any trials that working on your type of cancer. Some will not be open to you for various reasons ie: must never have received previous treatment; must not have tumor larger than…. Etc. others will be out of your area, but if you are willing to travel, you can get into the study. If you do have to travel, they will help you find hotel rooms at discounted prices. Good resource. There are other private ( not necessarily approved by FDA) that you may find with an internet search, though sometimes you will be on the 5 th or 6 th page before you find them. Many times the study is paid for by the drug company that is backing the study.
Good luck. Hope you find what you are looking for.
Replies to "Contact the American cancer society. It cost nothing. They will ask a few questions about your..."
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There are various sites, ACS among them, who can find trials for you; some non-profit, some questionable, some not-so-reputable just seeking to collect data about you, so be careful with any information you share:
The NCT site https://clinicaltrials.gov/ is the starting point for many, but can be hard to navigate, since it includes info about non-cancer trials as well.
The ACS page at https://www.cancer.org/cancer/managing-cancer/making-treatment-decisions/clinical-trials/what-you-need-to-know/picking-a-clinical-trial.html has links for five resources and phone numbers for two under "General cancer clinical trial listings" and "Clinical trial listings, by cancer type."
I've gotten good trial links for pancreatic cancer trials from https://pancan.org/ but never one that was timed right or in a good location for me.
I also got six relevant trial referrals from https://cancercommons.org/ after giving them a LOT of information, but none of them were timed right or in a good location for me either.
https://massivebio.com/explore-clinical-trials appeared as a sponsored hit in a Google search, but I don't know anything about them.
THE BIG QUESTION with all of these is, after you/they find a relevant trial, whether they'll help you with the hard part -- the legwork of making phone calls, sending emails, getting those calls and emails returned, and doing other referral/logistical work to actually get you into a trial.
Trial drugs and devices are usually covered by their manufacturer; most private, US-based insurance companies won't pay for a drug or treatment that's not FDA approved. The insurance question becomes trickier if there are other costs involved (like scans, surgeries, co-administered drugs, or an in-patient stay required). There is also the aspect in Phase-1 trials that are considered completely "experimental" if their writeup describes them solely as seeking to identify max-tolerated-dose and similar parameters without explicitly describing "outcome /curative intent" somehow as one of the endpoints.
As for lodging, the social worker at my target, out-of-state hospital provided me a link to https://www.joeshouse.org/ where we found a nice, pet-friendly, very affordable apartment within a 15-minute walk of the hospital where I'm being treated.