Skip to main content
Content Medically Reviewed & Updated: May 10, 2026 Call 24/7: 1-800-400-1805
1-800-400-1805 Free Case Review
Sign In Join Free

how did you actually pick a clinical trial? what made the difference for you

Family · · 45 views
So Joe got his diagnosis in September and by November we were looking at trials because his oncologist mentioned a few options and honestly I was completely lost. Like I taught high school English for 32 years, I can read, but medical trial stuff is a whole different language and I didn't know where to even start.

We ended up going with an immunotherapy trial at Moffitt here in Tampa because it was close to home, but I realize now we kinda just... picked it because of location and because the coordinator seemed nice. That's not exactly a great decision making process.

What I wish I'd known going in: the trial coordinator matters way more than I thought because you're gonna be calling them a lot about appointments and side effects and paperwork, and you need someone who actually responds and doesn't make you feel like you're bothering them. Also the eligibility criteria stuff - we almost missed that Joe's previous imaging didn't meet their exact requirements and it would've been a whole thing.

Anyway, I'm curious how other people actually evaluated them. Did you look at the success rates from other sites? Did you ask about how many patients they'd already enrolled? How much did location factor in for you guys?

8 Replies

Patient
I'm still in the evaluation phase myself, so I'm probably not the most helpful here, but I've been doing a ton of research on HIPEC trials for peritoneal and location was honestly my third or fourth priority, which surprised me. My oncologist at Cleveland Clinic mentioned two options back in November and I immediately pulled the published data on both. One trial had a 2021 study showing median overall survival of 52 months versus the other at 38 months, so that alone narrowed things down pretty significantly.

What you said about the coordinator really resonated with me because I've already had to call one trial site three times about my pathology slides and the response time was brutal. The other site called me back within 24 hours. That matters when you're trying to make a decision this big.

I also looked at how long each trial had been enrolling and whether they were close to their target numbers. If a trial is almost full, sometimes they rush you through screening or they get picky about edge cases in your staging. I actually asked for the enrollment numbers directly and wasn't shy about it. One coordinator seemed annoyed by the question, which told me everything I needed to know.

The thing I'm wrestling with now is that the trial with better published outcomes is farther away, and I'm still working through whether I can manage the travel logistics. But I decided I wasn't going to pick based on convenience this time. Too much at stake.
Family
Oh wow, you're doing your homework way more than we did! That survival data comparison is exactly the kind of thing I wish we'd dug into before just saying yes. I mean, that's a pretty big difference between 52 and 38 months. Did your oncologist talk through what might account for that gap, like patient selection or how long the trial's been running? And Cleveland Clinic has to have solid resources for this stuff too.
Patient
Yeah the coordinator thing is huge, I learned that the hard way with my tune-up appointments after surgery. Mine was great about getting back to me quick, but I heard from other guys at the support group whose coordinators were basically ghosts and it made everything ten times harder.
Family
honestly location was huge for us too, my mom's in phoenix so that was kind of the deciding factor and i've stopped beating myself up about it because at least we're here and can actually make the appointments. the coordinator thing though, yeah that's so real - ours is amazing and it makes such a difference when someone actually calls you back.
Family
Yeah, exactly. I think there's something people don't really talk about, like you can read all the data in the world but if you can't actually get to the appointments or your coordinator ignores your calls, none of that matters. And honestly with everything you're dealing with emotionally, having someone competent and kind on the other end of the phone is huge. Sounds like your mom's in good hands with her coordinator.
Patient
I'm still in the evaluation phase myself so I haven't committed to anything yet, but I've been doing what feels like a second full-time job researching HIPEC trials for peritoneal. Location was definitely my first filter, Cleveland area or within driving distance because I can't be traveling to Tampa or Houston every other week for imaging and infusions. That narrowed things down fast.

What's been more useful is pulling the actual trial protocols from ClinicalTrials.gov and reading through the inclusion/exclusion criteria line by line. I keep a spreadsheet now with the specifics. My CA-125 levels are borderline for some trials, my imaging shows some adhesions from previous abdominal work, and one trial I thought was perfect actually requires a minimum performance status I'm not quite at yet. Found that out by calling and asking, not from the summary.

The trial coordinator thing you mentioned is so important. I called three different sites and asked to speak with the coordinator, not the recruiter. Asked them specific questions about their follow-up protocol for adverse events, average response time for calls, what happens if you need imaging outside their facility. One coordinator at a major cancer center basically ghosted my question for two weeks. Didn't bother following up there.

I'm also looking at enrollment numbers and how long the trial's been running. A newer trial with 12 patients enrolled is different from one that's been going for three years and has 80 patients. The longer trials have more published interim data usually. And I asked about crossover options if the trial isn't working, because that's not always spelled out clearly.

Haven't made my decision yet but I'm planning to have it done by January.
Medical ✓ Expert Response
Honestly your instincts about the coordinator were better than you're giving yourself credit for. That relationship is genuinely one of the more underappreciated parts of trial participation and I've watched patients drop out of otherwise well-matched trials because communication broke down with the site team.

A few things I wish more families knew going in. The NCI's clinicaltrials.gov listing will tell you how many sites are actively enrolling, and calling a site that's already near its enrollment cap is a very different experience than one that's hungry for patients and has a well-oiled intake process. We had a patient in early 2022 who drove to a site in Houston specifically because their Moffitt slot had filled, and it ended up being the right call for completely different reasons.

Phase of the trial matters a lot more than people realize too. Phase 1 is primarily about safety dosing (figuring out how much the body can tolerate), Phase 2 is looking at whether it actually works, Phase 3 is comparing it against standard treatment. The efficacy data you can reasonably expect to see is very different depending on which phase you're looking at, so asking "what are the success rates" sometimes doesn't have a clean answer yet.

The question I'd push people to ask more often: how does the trial handle patients who aren't responding. What's the off-ramp. Because the answer tells you a lot about how the site thinks about the whole person, not just the data point.

Talk to Joe's oncologist about whether the specific trial design matches his current disease status, because that piece is hard to evaluate from the outside.
2 found this helpful
Patient
Yeah and honestly check if they got experience with YOUR specific type, not just mesothelioma in general. Mine was pleural and I almost got put in a trial that mostly dealt with peritoneal cases and the coordinators kinda didn't know the ins and outs of what I'd need post-surgery.

Share Your Experience

Sign in or create a free account to share your experience.

Sign In Create Account

Discussions in this community are for informational and emotional support purposes only. They do not constitute legal advice, medical advice, or an attorney-client relationship. Always consult a qualified professional for advice specific to your situation. Community Guidelines

Call Now: (800) 400-1805 Free Case Review • Available 24/7