How do you get into clinical trial?

@val64

You have taken first step and done the research. It is a shame that your provider are not helping you by looking at alternative trails.

In clinical trials I have participated in at Mayo, the study coordinated reach out to me due to something in my medical history. One time I contacted the study coordinator directly about a investigate study at Mayo and she did reply and was accepted.

Studies have many phases, and even though listed on trails sites, they may not always be accepting new patients. I was supposed to be in investigate study starting this month and got a call that study had been closed early and no longer needed me.

Did you email the doctor or the study coordinator? In my experience, the study coordinator does all the initial evaluation and contact with patient. I do not think I have ever had communication with the researcher directly.

I understand you are eager to hear response, but if someone is on vacation for a week, they may not have coverage in their absence.

If do not hear from study coordinator, maybe another email or call coordinator directly if phone number listed or call hospital and ask to be connected.

@val64 I haven't applied to clinical trials but here is what I would do. From the posts here on Mayo Clinic Connect I know you to be a very tenacious individual so I wouldn't expect you to hear that you are siting back and waiting for a reply. I recall that you are a scientist. Do you have a network of people you work with who know others that could help you with this? I'm suggesting this because that's what I did many years ago (not for cancer) when I had difficulty moving the medical system along.

I don't know how the inquiries for the clinical trial you identified are set up. I'd contact (by email) the study coordinator and cc the researchers/physicians on the trial. I'd also look for other trials too. As I recall you are in Philadelphia? Are there clinical trials in NYC where you meet the study's criteria? I'd cast a broad net since you are in an area with many academic medical centers.

I've been contacted by email by study coordinators at Mayo Clinic but that's because I've allowed my patient records to be available. None of these have been clinical trials, though.

Please, will you let me know what happens? I think of you often and so appreciate the information and support you've offered members here at Mayo Clinic Connect.

Val, Cheers to your approach. If you look up the clinical trial, you'll find a description toward the bottom are the places fielding the trials next to that the list of clinical trial investigatos with their phone numbers. Call. If you get a message you can leave a message, but I never do. Call at different hours of the weekday until the investigator answers the phone. Usually there is one primary person fielding all the calls and they are at the phone three, four hours a day. Eventually these trials quit recruiting; patience isn't a virtue.
Some doctors are good at finding and referring for clinical trials, most are not.
Best Luck

I've had treatment at two centers of excellence, consults at two more centers of excellence, and also treatment at one local branch of a national cancer network. All four have offered me a trial at one time or another, but it was ONLY a study their institution was conducting or participating in; NEVER an outside study regardless of how much more relevant/beneficial one could have been. I applied for two trials at another regional cancer network, and after they took all my info and got my records release authorization, never called me back. I've also called two other centers with inquiries, and after getting through to a human, they were at least courteous enough to tell my my condition didn't qualify or they were no longer recruiting.

Needless to say, I'm very disappointed in this aspect of the system!

I think another approach you could try, @val64 , in addition to pinging the researchers and study coordinator, is to look at the list of _clinical_ oncologists (who actually see and treat regular patients) at the institution where you want to participate in the study. Schedule a "second opinion" consult with one of their oncologists. When you get there, consider making them your new primary oncologist (at least temporarily) -- get their full opinion on your case, but tell them explicitly that you're also interested in a trial they're conducting so they have to address it while you're in the room. You should certainly expect and deserve a callback with info about it if they don't have the info immediately available. They're vested in you because you're now their patient. If you get no satisfaction, consider repeating the process elsewhere (within your realistic means).

I've finally made my way into a trial that opened up at one of the two institutions I regularly visit, and the clinical oncologist I see also happened to be one of the researchers (name didn't show up on the NCT site), so she referred me and was pulling for me from the start.

It can be difficult and unfair, as well as time consuming to say the least. Once you get past the first gatekeepers, there also may be insurance hurdles to clear, so you'll have to inquire about those as well. It's sad that we have to fight these battles on top of fighting cancer, but I hope my experience helps someone.

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As an added note, this week may be very difficult to get an appointment or a trial-related callback. The national convention for ASCO (American Society of Clinical Oncologists) in Chicago runs from May 31 - June 4, so a lot of the doctors are on travel and possibly rolling it into a vacation with their kids getting out of school for summer. 🙁

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.

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.

you might be able to get your present oncologist to order the necessary test so they will be covered by insurance so that housing will be your major cost.
the trials that I found ,when I was researching for my cancer, had full write ups about what they planned on doing and what results they were looking for, including side effects.
I guess I would call them and ask them for a long explanation.
I know it is scary to enter a trial that isn't at a major institution and FDA approved.
BTW, the same study could be done at one of those institutions. The drug company that is paying for it may have better answers. Might be worth a call to them.
best of luck. keep us posted.

I forgot to mention, that at least for pancreatic cancer, PanCan.org has a "KYT" (Know Your Tumor) program in conjunction with Tempus Labs. If you have a doctor's order and biopsy tissue available, PanCan will pay for a good level of next-generation sequencing (NGS) to determine if there are any actionable mutations.

Tempus also tests tissue from many other cancers, but I don't know about instructions or reimbursement for getting the testing done.

What I do know is that Tempus also provides a list of trials that are relevant to any mutations they identify. A bonus of theirs is that although the publicly listed trial locations might not be convenient, Tempus can open what they call a "Time Trial" for one patient (you) at multiple other sites within their network, piggybacking off all the infrastructure from another site.

Thanks for all the suggestions! Tomorrow I'll call until somebody picks up and will also inquire about a similar trial in NYC. Will take a look at some of these other resources.

The kind RN @ American Cancer Society states good nurses are overworked and always running. It all depends on you. I am 76 and can accept if immunotheraphy does not improve my melanoma a bit, I am ready for hospice. Where are your priorties?