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Empowering Patients with Lung Cancer to Take Control of Their Own Care



Kristie L. Kahl: Why is it important for patients to consider joining a clinical trial?

Andrew Ciupek: There’s two main reasons. We’ve seen a vast increase in the amount of drug approvals for lung cancer over the past 10 years, more than the past 30 years combined. All of those new treatments started as clinical trials. I like to tell people that clinical trials are one of the ways that you can access some of the most cutting-edge and developing treatment options for you.

In fact, most clinical guidelines that doctors use to treat lung cancer recommend the consideration of clinical trials at any stage you are in your treatment because that’s where you’re going to get access to these new, up-and-coming therapies. For a lot of people, it may be the best option for care or may present a new option of care for you.

The second reason: We’ve been able to make so many advances in lung cancer research, which has led to all of these drug approvals because patients participated in clinical trials and that is the way we drive research forward. Participation in clinical trials can be a great way for lung cancer patients to drive the research themselves, kind of pressing development forward and being a part of that. Really to get the best options for your treatment and drive lung cancer research that you are interested in, in a very personal way, are reasons to consider them.

Kristie L. Kahl: How can patients learn more about trials?

Andrew Ciupek: A really great place to start, first, is with your doctor. There are a lot of clinical trials that may be taking place even in the hospital or clinic you’re being treated at. Starting that conversation with your doctor can help you learn about those as well as other options that may be available to you, because they know the most about your journey so far.

A lot of way you can also do your own research after starting with your doctor, there are a lot of online resources now. One of the main ones is clinicaltrials.gov, which is kind of set up like a Google search engine for clinical trials. All clinical trials are required to be registered there.

Although, we hear from a lot of patients, the results are often very numerous and complicated to sort through which are the most useful. So, I think (patients) should take that and utilize other resources that could be helpful. A great example is we’re seeing more and more patients actually getting together with one another to share information. There are certain social media groups and there are also online forums and other places that patients can share information. A lot of them are very knowledgeable about what clinical trials are happening.

Also, there are a lot of community resources, like patient advocacy organizations. A lot of them, including the Go2 Foundation for Lung Cancer, have a lot of resources that can help people, too. For instance, we have the Lung Match Program, which is really designed to help people understand their treatment options. One part of that is our clinical trial matching program. People can call us at our helpline at 1800-298-2436 or email us at support@go2foundation.org, and talk to one of our clinical trial navigators. That is someone like myself or other people on the staff who try to keep up on all of this information, and what we’ll do for you is help give a list of personalized clinical trials that you can take to your doctor to help you ask the right questions and get that conversation started.

I think there are a lot of different resources you can use when you look out at the community, but definitely start with your doctor and then doing your own research, can really start to point you in the right direction.

Kristie L. Kahl: Go2 Foundation for Lung Cancer also has a patient registry; can you talk about this?

Andrew Ciupek: The lung cancer registry is a great opportunity for patients to contribute directly to research and drive research in a direction they want to go in. One of the big problems we have in doing lung cancer research is that patients across the country and the world are being treated at thousands of different hospitals and clinics by thousands of different doctors. Because of that, we don’t really hear about the individual story of a large majority of lung cancer patients and what they’ve been experiencing.

So, treatment may work really well for one patient and not really well for another. We don’t necessarily learn from that experience. So, the lung cancer registry was created as a way to bring together patient stories and amplify that to create more data and drive research forward.

The great thing about it is patients contribute the data directly themselves. A patient can go to the website, lungcancerregistry.org, and fill out a series of surveys. The surveys ask simple questions about your treatment journey, what type of treatment you’ve received, what your diagnosis is, where you’ve been treated. It also asks a lot of questions about how lung cancer has impacted your life — the social impact, economic/financial impact, impact on your family and other things. That is all compiled into a database, and people who are conducting lung cancer research can access it and utilize the collected information of all of those things together to decide what studies they need to do next but also look and see what they can learn from the information.

This is a really great way for patients to directly contribute their story to be used for research and to also have the option to decide how their information is used. We ask people what kind of studies they would be willing to have their information shared to. It’s a way to make sure that your story gets contributed and also drives research directly. So, it’s a really personalized way to solve this problem.

Kristie L. Kahl: There is also the Addario Lung Cancer Medical Institute, can you tell us more about this?

Andrew Ciupek: The Addario Lung Cancer Medical Institute, or ALCMI, is a sister organization to the Go2 Foundation for Lung Cancer. It can be thought of as our clinical trials arm. ALCMI was created to accelerate the pace of research and the results of research getting to patients who need those results faster. They do that through a number of ways. ALCMI itself is a collaboration of about 26 current clinical and research sites, both in Western Europe and the United States. They focus on doing multicenter studies to learn from all of those. ALSMI itself offers resources that lower the barriers to starting and running these trials so that they can get done quicker and the data can get back to patients quicker.

A great example (of this), is that they have a master collaboration agreement between all of the sites to lower the regulatory contracting burden and the speed for which clinical trials can be open. They offer a lot of resources. There are a lot of researchers who work with ALCMI who are key opinion leaders that offer advice to people who are starting trials and push them in the right direction. They also offer a lot of resources to do studies in a unique way. For instance, mutations in ROS1 and people who have lung cancer who have that mutation, there weren’t a lot of models to study them in the laboratory and develop new treatments.

ALCMI worked to get both blood samples and tumor biopsy samples from patients who had ROS1-positive lung cancer across the world and bring them into the hands of researchers so that they can create experimental models and really drive forward research there. So, it shows the power they have to work across different subtypes.

There is also the ability to bring together patients to learn from them, no matter where they are. A great example is the recent increase in young never-smokers who are diagnosed with lung cancer. ALCMI started a study called the Genomics of Young Lung Study that is looking to see what might be causing this lung cancer in patients by collecting genomic information and information about the family history. They have the ability to draw that together and put it in the hands of researchers. All in all, it’s an organization focused on getting research done quicker that patients really want to know.

Kristie L. Kahl: How can we help patients to empower themselves so we can keep making change?

Andrew Ciupek: One of the main ways is that patients feel more empowered with the more information they have. When you have information, you can go into your doctor and have a more productive conversation. You’ll feel more empowered. When you go to make treatment decisions, you can feel more confident that you’re making decisions with all of the information that you have.

I tell a lot of patients that a great way to do that is to become more informed about your diagnosis. It begins with asking questions to your doctor, but that may be hard at first when you are getting up to speed on your diagnosis. One of the great things about lung cancer is that we’ve seen so many approvals for new drugs over the past 10 years, but it also means it’s becoming more and more complicated to learn about your diagnosis and keep up with everything.

That is really where it’s important to lean on the resources, the communities can really help. Patients are starting to form their own groups online and offline to share information. There are a lot of resources offered by patient advocacy organizations, like Go2 Foundation for Lung Cancer’s Lung Match Program where you can talk to navigators and learn about what research options and new treatments are being developed for your diagnosis. Really, it’s reaching out and finding the information you need to feel empowered to take charge of your own care.

Transcript edited for clarity.

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