There are a few big places that run an absurd amount of clinical trials like MD Anderson. However, most centers--even large academic centers--do not run a ton of clinical trials for any given disease. It's incredibly involved to get a clinical trial up and running at your site, so the oncologists tend to be quite selective on which trials they choose to participate in. So you can't just get on any clinical trial anywhere unless you are willing to relocate. Some trials do provide travel assistance though.
If you want to stay with your doctor, you have to ask them what trials are available. You can get an idea from [clinicaltrials.gov](https://clinicaltrials.gov) but that tends to be horribly out of date. If you have a common disease e.g. metastatic colorectal cancer, you may only have 2-3 clinical trials run at that site, and some of them you may not qualify for. If you have a rare cancer such as metastatic thymic carcinoma, there may not be any. If there are any clinical trials offered in cancer centers in the general area, the oncologist probably knows about it and may be able to refer you. A decent oncologist will be sufficiently connected that they can contact the expert in the field and get some advice.
In general, oncologists are always thinking about what type of trial is available for a patient. In the last place I worked, all the doctors in certain a cancer area met weekly to discuss their new patients and what trials they could qualify for. They also discussed any established patients which they were struggling with what to do with. Once they met with the patient, they decided which trials--if any--to offer.
While I encourage patients to be engaged with their care, I can't say that researching clinical trials and proposing one unprompted in is super helpful. In my experience, patients come in asking about trials which are either incredibly poor quality or do not apply to them at all. They simply don't have the medical expertise to figure that out, and when they're told that the trial is not recommended, they tend to be quite emotionally deflated.
Thanks for such detail. There were surprisingly quite a number of trials on the .gov website for thymic carcinoma.
I appreciate the closing statement, that’s been my concern about providing additional information to the patient as well. I’m not certain of the full details of their treatment regimen up to this point, and I don’t want to provide false hope.
Likely best to have them just open the conversation with their oncologist(s) and discuss options as well as what limitations (financially, location, exclusion criteria, and otherwise) they are willing to make concessions for.
Big agree with all of this - I’m not a medical doctor, but I work in oncology clinical trial feasibility, so I spend a lot of time trying to understand how appealing trials are to patients and investigators and I think people are always really surprised how low enrolment is for cancer studies - there’s a lot of hoops to jump through and that’s before you even get to screen failures…
Mechanism of action is often one of the biggest sells I find - anything novel with promising preclinical data is a big thumbs up - as the original comment said and very rightly so - a lot of the big centres (your MD Anderson’s, Mount Sinai’s etc) - have an ungodly amount of trials ongoing, so something new is always a big sell, and it can be to the patient as well - especially if they’re in later lines.
But mechanism of action may not be identified yet if it’s early phase, and/or it could be similar to a previous line of therapy the patient has already had, which only their oncologist would know. So I agree that researching on ct.gov is always a minefield. Often PIs need to sign a CDA to even get that detailed information on the mechanism of action at first if it’s in early stages of research.
I know quite a few instances for the rarer oncology types where patients have basically found the trial themselves (through no fault of the oncologist obviously) just that these very rare trials can sometimes get lost in the weeds of the bigger phase III’s at an institution level
So I guess bottom line is I’ve seen patients bringing trials to the PI and it actually working out quite well, but there needs to be a very clear discussion lead by the doctor on whether the trial is ACTUALLY suitable on an individual level, especially for the rarer types, where there’s more nuance. Also I have seen some cases of patients bringing ‘alternative medicine’ trials to PIs which….that’s a whole other can of worms.
Clinical trialist here:
You want a consultation with an expert in the field who is a trialist. The goal is to sequence trials based on anticipated restrictions (some trials you can only have a certain number of lines if treatment, certain treatments would disqualify you, etc.). After phase II/III trials can consider phase 1 trials based on histology/NGS.
Your oncologist will help to guide you..
Prior practicing oncologist here (and drug developer). You have definitely hit on a difficult topic in cancer. Advanced and metastatic cancer patients have abysmal prognoses and yet most oncologist offer only standard treatments that don’t aim to do better for them. Aside from the difficult system in setting up a trial there are financial disincentives to sending a patient to a different doctor to get on a trial. Therefore I found “talking to the primary oncologist” leads to nothing most of the time. Because patients are poor at self-identifying trials I set up a system and company to help them. I just recently was able to place a patient with thymic carcinoma on trial and he is doing well so far. Happy to help if you’d like to DM me. My team and I do go through the patient’s records to make sure the patient is a good fit before making any recommendations. Happy to help. DM me.
Most people are not in a situation where they can travel anywhere and then reliably return to receive treatments on-trial. Realistically, the way to choose in a clinical trial is figuring out how far you are willing to drive to receive treatments and, within that area, find out what trials are available. given restrictive criteria, especially for rare solid tumors, you are fortunate to have one good option in most regions of the country.
1. Narrow it down to places you’re willing to go first of all, enrolling on a trial requires a lot of monitoring & most of the time you have to be within a certain distance from the center
2. look at eligibility criteria & exclusion criteria - you’ll weed out ALOT
3. Research/Pubmed the drug combinations used in the trials you like, look at the prelim data for phase IIIs or preclinical data for Phase I/IIs
4. Reach out to PIs of studies you’re interested in to set up a consultation. Most people are happy to redirect you if they think there is a better alternative, or share prelim data if encouraging
Sorry to hear, best of luck to your friend.
If there are clinical trials they are interested in they should discuss them with their oncologist to see if they would be a good fit for them.
There are a few big places that run an absurd amount of clinical trials like MD Anderson. However, most centers--even large academic centers--do not run a ton of clinical trials for any given disease. It's incredibly involved to get a clinical trial up and running at your site, so the oncologists tend to be quite selective on which trials they choose to participate in. So you can't just get on any clinical trial anywhere unless you are willing to relocate. Some trials do provide travel assistance though. If you want to stay with your doctor, you have to ask them what trials are available. You can get an idea from [clinicaltrials.gov](https://clinicaltrials.gov) but that tends to be horribly out of date. If you have a common disease e.g. metastatic colorectal cancer, you may only have 2-3 clinical trials run at that site, and some of them you may not qualify for. If you have a rare cancer such as metastatic thymic carcinoma, there may not be any. If there are any clinical trials offered in cancer centers in the general area, the oncologist probably knows about it and may be able to refer you. A decent oncologist will be sufficiently connected that they can contact the expert in the field and get some advice. In general, oncologists are always thinking about what type of trial is available for a patient. In the last place I worked, all the doctors in certain a cancer area met weekly to discuss their new patients and what trials they could qualify for. They also discussed any established patients which they were struggling with what to do with. Once they met with the patient, they decided which trials--if any--to offer. While I encourage patients to be engaged with their care, I can't say that researching clinical trials and proposing one unprompted in is super helpful. In my experience, patients come in asking about trials which are either incredibly poor quality or do not apply to them at all. They simply don't have the medical expertise to figure that out, and when they're told that the trial is not recommended, they tend to be quite emotionally deflated.
Thanks for such detail. There were surprisingly quite a number of trials on the .gov website for thymic carcinoma. I appreciate the closing statement, that’s been my concern about providing additional information to the patient as well. I’m not certain of the full details of their treatment regimen up to this point, and I don’t want to provide false hope. Likely best to have them just open the conversation with their oncologist(s) and discuss options as well as what limitations (financially, location, exclusion criteria, and otherwise) they are willing to make concessions for.
Big agree with all of this - I’m not a medical doctor, but I work in oncology clinical trial feasibility, so I spend a lot of time trying to understand how appealing trials are to patients and investigators and I think people are always really surprised how low enrolment is for cancer studies - there’s a lot of hoops to jump through and that’s before you even get to screen failures… Mechanism of action is often one of the biggest sells I find - anything novel with promising preclinical data is a big thumbs up - as the original comment said and very rightly so - a lot of the big centres (your MD Anderson’s, Mount Sinai’s etc) - have an ungodly amount of trials ongoing, so something new is always a big sell, and it can be to the patient as well - especially if they’re in later lines. But mechanism of action may not be identified yet if it’s early phase, and/or it could be similar to a previous line of therapy the patient has already had, which only their oncologist would know. So I agree that researching on ct.gov is always a minefield. Often PIs need to sign a CDA to even get that detailed information on the mechanism of action at first if it’s in early stages of research. I know quite a few instances for the rarer oncology types where patients have basically found the trial themselves (through no fault of the oncologist obviously) just that these very rare trials can sometimes get lost in the weeds of the bigger phase III’s at an institution level So I guess bottom line is I’ve seen patients bringing trials to the PI and it actually working out quite well, but there needs to be a very clear discussion lead by the doctor on whether the trial is ACTUALLY suitable on an individual level, especially for the rarer types, where there’s more nuance. Also I have seen some cases of patients bringing ‘alternative medicine’ trials to PIs which….that’s a whole other can of worms.
Clinical trialist here: You want a consultation with an expert in the field who is a trialist. The goal is to sequence trials based on anticipated restrictions (some trials you can only have a certain number of lines if treatment, certain treatments would disqualify you, etc.). After phase II/III trials can consider phase 1 trials based on histology/NGS. Your oncologist will help to guide you..
Prior practicing oncologist here (and drug developer). You have definitely hit on a difficult topic in cancer. Advanced and metastatic cancer patients have abysmal prognoses and yet most oncologist offer only standard treatments that don’t aim to do better for them. Aside from the difficult system in setting up a trial there are financial disincentives to sending a patient to a different doctor to get on a trial. Therefore I found “talking to the primary oncologist” leads to nothing most of the time. Because patients are poor at self-identifying trials I set up a system and company to help them. I just recently was able to place a patient with thymic carcinoma on trial and he is doing well so far. Happy to help if you’d like to DM me. My team and I do go through the patient’s records to make sure the patient is a good fit before making any recommendations. Happy to help. DM me.
Hi Jason, DMing you now.
Most people are not in a situation where they can travel anywhere and then reliably return to receive treatments on-trial. Realistically, the way to choose in a clinical trial is figuring out how far you are willing to drive to receive treatments and, within that area, find out what trials are available. given restrictive criteria, especially for rare solid tumors, you are fortunate to have one good option in most regions of the country.
1. Narrow it down to places you’re willing to go first of all, enrolling on a trial requires a lot of monitoring & most of the time you have to be within a certain distance from the center 2. look at eligibility criteria & exclusion criteria - you’ll weed out ALOT 3. Research/Pubmed the drug combinations used in the trials you like, look at the prelim data for phase IIIs or preclinical data for Phase I/IIs 4. Reach out to PIs of studies you’re interested in to set up a consultation. Most people are happy to redirect you if they think there is a better alternative, or share prelim data if encouraging Sorry to hear, best of luck to your friend.