r/pancreaticcancer • u/raris_rovers • 2d ago
seeking advice Finding Clinical Trials truly Available
Anyone else having trouble even seeing if clinical trials are truly enrolling. When I call through multiple lines of office staff getting rerouted until I sometimes get a knowledgeable coordinator but typically get a number straight to voicemail.
I’ve heard “You need to be register as a patient to speak with a nurse and see if trials are enrolling” which seems ludicrous given the variety of trials/locations across the country.
The lack of updates on clinicaltrials.gov is true enrollment is criminal imo.
Can anyone help navigate this mess.
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u/TrainingUmpire512 1d ago
Our experience has been that you do have to be in the institutions system to be considered for a trial. This makes things cost prohibitive for so many. If you aren't in their system as a patient, you have to establish care first. We have had to do this at several cancer centers to be considered for trials. We had the experience at one where we were told we had to establish care, we did the next week by traveling to the institution to meet with an oncologist and were then told there were 80 ppl ahead of my husband on the waiting list for the trial (meaning it was very unlikely he would ever get in). We have since gotten him into a trial at MD Anderson, but he was already set up as a patient there. I called many many places, some flat out told me that they wound only consider their current patients for the trials not new ones. So, I do think you have to spend a lot of time calling, you also have to invest time and money to go to several sites, and some centers have different rules- but mainly I have found that you have to establish care at that institution first. It's terrible and time consuming, not to mention expensive.
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u/raris_rovers 1d ago
Would you go in blind or already have a trial in mind to enroll in?
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u/TrainingUmpire512 20h ago edited 20h ago
Oh I do the research before. I actually started my search with about 250 potential clinical trials and narrowed it down to 5 that he would be eligible for - by reading the description of each one, inclusionary and exclusionary criteria, etc. This took me some hours... then I started targeting those studies and sites. We really wanted one of them out of the 5 the most as it was most targeted for him and I pursued those sites the most aggressively and got him in.
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u/TrainingUmpire512 20h ago
It's so much time unfortunately. I have three school aged kids, my husband is in his 40s, a crazy full time job, etc. I did this in the middle of the night for a couple nights.
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u/Labrat33 21h ago
Clinicaltrials.gov, Pancan.org, etc are often of VERY limited use. There may be trials listed as open and recruiting that have not enrolled a patient in months, or are only enrolling to lung cancer and not pancreatic cancer cohorts.
As an investigator at an academic center with multiple trials, I do not often know what trials have slots and are recruiting on a given day. Trials get paused. Many trials have multiple cohorts - and we may be only recruiting into one of the cohorts at a given time (just untreated metastatic KRAS G12D pancreatic cancer). When I see a new patient or when a patient’s cancer progresses and needs a new line of therapy, I email our research team to see if we may have something immediately available or anticipated in the near future. So my emails will look like, “64F KRAS G12R mutated and MTAP lost metastatic pancreatic cancer to lung/liver (with biopsy targets) with prior FOLFIRINOX and Gem/Abraxane.” Then I find out if we have a trial I can offer. I will often cc colleagues at nearby institutions since they may have a trial/slot we don’t have. Sometimes I get an email from a colleague - “Hey, we are getting three slots for untreated KRAS G12C panc in the near future, so let me know if you have a patient who may be suitable.” We also maintain a database of patients and their KRAS mutations to serve as a waiting list for all trials.
So, at the moment there is seemingly no good way to communicate the information you are seeking. The situation is much better for large Phase 3 trials, like the recently completed accruing Phase 3 study of 2nd line RMC-6236 (results pending), as when it was open each institution had dozens of slots. But much of what is being done at the moment with KRAS inhibitors including the scant open trials of RMC-6236 are much smaller trials seeking specific patient characteristics.
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u/PancreaticSurvivor 2d ago edited 2d ago
I find the clinical trial site TriCanHealth.com easier to use and more accurate on trial recruiting status. The issue with clinicaltrials.gov is what you mentioned…not updated to keep current. TriCanHealth was aware of they shortcoming and why they are focused on making their site more patient friendly and beneficial. I go to it first for trial searches in the US and to clinicaltrials.gov,if looking for international trials.
When I was searching for trials from 2013-2014, I was using clinicaltrials.gov and talked either to the a principal investigator or the clinical trial nurse coordinator. I didn’t have to be a registered patient having current treatment at the medical center running the trial.