For a disease like pancreatic cancer, clinical trials are a critical treatment option. These research studies investigate new treatments or new combinations of treatments to determine if they are beneficial for people living with pancreatic cancer. PanCAN recommends clinical trials at diagnosis and during every treatment decision, as patients who participate in clinical research have better outcomes.
A great first step to explore clinical trials? Contact PanCAN Patient Services. Our Case Managers can provide you with a list of options personalized to your needs. We can also support you throughout the process of finding and enrolling in a trial.
Here, PanCAN Patient Services Manager Rohail Hameed walks through the steps to enroll in a clinical trial and talks through some common questions and concerns.
A patient with pancreatic cancer has contacted PanCAN Patient Services to receive their personalized list of clinical trials. What is next?
As a first step we always encourage patients to review the list of trials with their doctor. Since their doctor understands their medical history and diagnosis best, they can help the patient understand which trials are appropriate or help determine if they meet the eligibility criteria.
We typically provide a phone number and that will direct the patient to someone who can speak to them about the trial. It’s important to note that different trials have different ways to get in touch with the study team. PanCAN Patient Services Case Managers can help at any point! You have a partner in this process – we can answer questions, troubleshoot or offer any other support you need.
After reaching out to a clinical trial, you’ll be connected to a research nurse or study coordinator. Patients should be prepared to provide information about their diagnosis and treatment history. They may be asked to come in for an appointment too because trials have specific eligibility criteria.
Let’s dig into eligibility criteria. What does this term mean? What do patients need to know about eligibility criteria as they explore clinical trials?
Every trial has its eligibility criteria. This helps give patients an idea of the population a trial is looking for. It’s not always comprehensive, though. They don’t always include everything in the eligibility criteria. That’s where the screening process comes in – that’s really when they’re seeing if the patient meets all the criteria.
Patients will most likely go through a physical exam or lab tests to see if they are healthy enough to participate. There is no guarantee that you are accepted until you go through the whole screening process and give your informed consent, which means that you learn important facts about a clinical trial, including potential risks and benefits, before deciding whether to participate. Trials normally look for a specific patient population, so the eligibility criteria can be quite strict. This is why reviewing a trial with your doctor first can be helpful. Sometimes a trial won’t work out for a particular patient, and that’s okay.
I always encourage patients who are told they are not eligible for a trial to find out the reason. This can be helpful to fine tune your search as you continue to explore options. You can ask the study team questions like, “I know I have this reason that’s preventing me from participating in this trial. Do these other trials have that same requirement?”
It’s also important to know the reason so you can discuss it with your doctor. If it’s something like lab values that weren’t in a certain range or you’re experiencing side effects that haven’t resolved, it may be something that you can address and then you could be eligible once it’s resolved. It is important for patients to remember that some trials are less strict than others. It is normal for patients to review and contact multiple trials before finding one they are a good fit for. Joining a clinical trial is a process, but learning more and contacting PanCAN Patient Services can make it easier.
Let’s discuss some of the common questions patients and families have when looking at clinical trials. Travel often comes up. What should patients be thinking about? What are some resources to help?
Travel is a big factor when considering participation in a clinical trial. You will likely have to be present at the site quite often, so you need to make sure you plan for it. Asking questions upfront about expectations is helpful. If travel is an issue for whatever reason, there could be options available for assistance. Sometimes the trial sponsor offers travel reimbursement, lodging resources or some type of financial assistance, but that can vary from trial to trial. PanCAN Patient Services has information on air travel and ground transportation resources. Also the trial site itself – the medical center – can often connect the patient with a social worker who can look into resources to help with travel.
And then there can be questions related to cost and health insurance. What should patients know about these topics?
We describe two different types of costs associated with clinical trials – research costs and routine medical care costs:
1. Research costs include any treatment, test or procedure specifically performed for the trial. These are typically covered by the clinical trial sponsor.
2. Routine medical care costs include anything that the patient would typically receive whether or not they participate in a trial. Normally those will be covered by health insurance, but again, that could also vary based on the patient’s health insurance or where they’re traveling to participate in the study.
This is another topic where it’s important to ask questions at the beginning of the enrollment process so there are no surprises later. PanCAN Patient Services Case Managers are a great resource here. We can help make sure you’re asking the right questions, provide support and guidance and connect you to resources if cost is a concern. Download our “Three Steps to Navigate Clinical Trials” checklist and use it to guide conversations with your healthcare team and clinical trial sites.
What do you say to patients and families hesitant to look at clinical trials as a treatment option?
Patients will often ask, “Will this trial work for me?” Unfortunately, there’s no way to know the answer to this question. What we CAN say is that patients in clinical trials receive high quality care. You are being closely monitored by a study team. You’re being seen by experts in the pancreatic cancer field who are using leading-edge technology. You’re also contributing to research to help advance new treatments. Our goal is to empower patients to consider all of their treatment options, with clinical trials being an important one. Finding a clinical trial can be complicated, but patients should know they are not alone and we are here to help.