r/pancreaticcancer • u/raris_rovers • 6d 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 6d 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 5d ago

Would you go in blind or already have a trial in mind to enroll in?

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u/TrainingUmpire512 5d ago edited 5d 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 5d 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.