Are we getting close to predicting how Crohn’s disease might change over time? Dr. Corey Siegel, co-director of the Inflammatory Bowel Disease Center at the Dartmouth Hitchcock Medical Center in Lebanon, New Hampshire, and Jessica Caron, a patient key opinion leader who lives with Crohn’s, discuss a prognostic tool called CDPATH. This tool may help patient and healthcare providers understand how the disease may change over the next few years, and better inform a discussion of treatment options.
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Episode transcript and more information at: https://bit.ly/AIBD128
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[Music: IBD Dance Party]
Amber Tresca 0:05
I’m Amber Tresca.
Amber Tresca 0:06
And this is About IBD. I’m a medical writer and patient educator who lives with a J pouch due to ulcerative colitis. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis, about their disease, and to bring awareness to the patient journey.
Amber Tresca 0:21
Welcome to Episode 128.
Amber Tresca 0:25
What if you had a way to know more about how your IBD was likely going to behave over the next three years? Would you want to know if you were at risk for serious complications? And if you did have this information, what would you do with it? patients with Crohn’s disease and their health care providers may now have a tool that can help determine the risks of certain complications, like developing a fistula or a stricture. It’s a blood test called CDPATH.
Amber Tresca 0:53
My guests are Dr. Corey Siegel, who is the co director of the Inflammatory Bowel Disease Center at the Dartmouth Hitchcock Medical Center in Lebanon, New Hampshire, and Jessica Caron, a patient key opinion leader who lives with Crohn’s disease. We dig into the purpose of CDPATH and for which patients it might be helpful in guiding a discussion of Crohn’s disease treatment options. Plus, Jessica gives her experience on how this tool played a role in her treatment decisions.
Amber Tresca 1:24
Dr. Siegel. Jessica, thank you so much for coming on about IBD thanks for having us.
Dr Corey Siegel 1:30
Yeah. Thanks, Amber.
Amber Tresca 1:31
Let’s start with some introductions. So folks know who you are. Dr. Siegel, would you please give us a brief introduction? Let us know who you are.
Dr Corey Siegel 1:37
Yeah, sure. Thanks. I’m very happy to be here. My name is Corey Siegel. I’m a gastroenterologist and IBD specialists and I work at the Dartmouth Hitchcock Medical Center in New Hampshire.
Amber Tresca 1:47
Jessica, you and I know one another. But please, would you give a brief introduction for our audience?
Jessica Caron 1:52
Yeah, absolutely. Yes, we go way back. I am a patient with Crohn’s disease. But I’m also a patient advocate, mainly because of the experience that I had in achieving my diagnosis and treatment. And I’ve taken part in a couple different initiatives. I’ve the chorus, the Abdi parenthood project, I like to speak with different patient groups and physician leaders to help progress healthcare events like btw and IBD, some smaller summits here and there and regionally, as well as working on this project, CD path,
Amber Tresca 2:25
Dr. Siegel, we’re here to talk about CD path, which is a prognostic tool that includes blood tests for people with Crohn’s disease. Would you start at the beginning and explain what led to the development of this test and what problem it’s looking to solve?
Dr Corey Siegel 2:42
Thank you, Amber. So we started working on the concept of CD path, you know, well over a decade ago. And the problem that I recognized when sitting with my patients in the office was we kept trying to differentiate who was going to have a good prognosis, and a more difficult prognosis of Crohn’s.
Dr Corey Siegel 2:59
And you and many of the listeners know that they’re all different variations of Crohn’s disease, some people do just fine without much treatment at all. And others have a very rapidly progressive course, that can end up in surgeries and multiple complications. But it’s not so easy to tell who’s who, when you’re sitting in front of them in the office. So when patients would ask me, Well, do I need to go on these biologic drugs or other drugs? The answer was, Well, I’m not sure we could watch and wait and see what happens over time. Or we could jump in right now and treat you with medications that we know can be effective. And it’s always a poll on both sides. You know, we don’t want to over treat people with medications they don’t need.
Dr Corey Siegel 3:41
But again, as you and many of the listeners know, Crohn’s disease, particularly can be very sneaky, and move very slowly over time. And people may not even have symptoms that are too bothersome until complications develop. But these complications such as strictures or scar tissue, and fistulous, which are connections between one piece of bowel to something else in the body, aren’t reversible with medications those are, that’s damage that’s done to the bowel.
Dr Corey Siegel 4:08
So the concept is if we can find out who the people are, that are more likely to have these complications, and treat them before the complications occur with good medications, then we could really make a step forward in helping those people and preventing those complications. But also recognizing that some people may not need much intensive therapy at all, and that we might be able to watch them carefully over time with other forms of treatment.
Dr Corey Siegel 4:32
So really, it’s a risk stratification tool to try to figure out who has a low risk versus higher risk of having more complicated or difficult Crohn’s disease and not waiting for that to happen, but treating them beforehand. And the idea was, if we can find some way to do that some way to predict the future that would not just help me as a doctor but would really help our patients in decision making and what medicines would be right for them?
Amber Tresca 4:58
For sure. Which Patients with this tool be available for and then also just how is it done?
Dr Corey Siegel 5:06
Yeah. And you know, the ideal person that could benefit from CD path is somebody with a relatively new diagnosis. Now I recognize Crohn’s could be a disease over a lifetime. So when I say relatively new, I mean within 10 years of a diagnosis, but really the best people would be soon after diagnosis, you know, you were just told you had Crohn’s disease, you are being given this entire list of medications that might work for you, you spent a lot of time listening to podcasts, searching the internet, talking to friends and relatives and maybe multiple doctors about treatments.
Dr Corey Siegel 5:38
And you’re trying to determine what’s right for me, you know, what’s the medication that’s needed for me? So earlier on in the diagnosis before these complications occur? Again, if if you show up for the first time with a really tight scar down stricture that needs an operation? You know, we know that you’re one of those people that are going to develop structures, we’re trying to identify people before that happens. And that’s why the sooner we do the test, the more useful it can be.
Amber Tresca 6:06
Right. And some IBD patients have a very long journey to their diagnosis. does that play into the timing for this at all?
Dr Corey Siegel 6:15
It’s a really good question. You’re right, that a normal time period from symptom onset to diagnosis could be a few years. And when I asked my patients when they were diagnosed, they might say, well, you know, 2021, yet I’ve had symptoms since 2017, that rights were either ignored for one reason or another, and the proper testing wasn’t done. And there was a delay. So as long as it’s within a few years, it’s a it’s an accurate test. And we’ve we’ve tested it up to 10 years after diagnosis. So there is a little bit of wiggle room there. But but you’re right that usually diagnosis is not when people symptoms started, it’s often sometime before,
Amber Tresca 6:55
Right. Jessica, what was your reaction when you heard about CDPATH? Like, what were your expectations? And what did you think about how you might use the results.
Jessica Caron 7:06
So when I first heard about CDPATH, I was honestly just really excited. Because up until that point, in my journey with managing Crohn’s disease, I hadn’t gotten it, right in the sense that I hadn’t been able to get myself into a full clinical remission. But I also was still making a lot of decisions in my day to day about life with Crohn’s disease because symptoms were ever present. And what I realized was that I was having trouble making decisions about treatment, for fear of what the future might look like.
Jessica Caron 7:40
But I wasn’t thinking about what the future might look like, with regards to my Crohn’s disease as only thinking about what the future might look like on these medications. So I was making decisions, unsure about the future with the treatment, based on my experience with the disease in the past, like I was making decisions through the rearview mirror. Yeah. And another element to that was the fact that I didn’t feel like any of the treatment decisions were personalized to me or my needs. At that point, I didn’t know how to make a decision based on, you know, Jessica’s experience with Crohn’s disease. So I had those two really huge elements of the decision making process weighing on me.
Jessica Caron 8:21
And as a result I was struggling with with the decision, we were kind of at a crossroads in my my treatment strategy where we knew based on my experience, that it was time to elevate my treatment options so that I could have a better future with managing this disease. But I personally was struggling with that decision. So when something like this came along, it helped me in two ways, because it helped me change my thinking, to being more forward focused in in my course of Crohn’s disease.
Jessica Caron 8:51
So I was starting to look at okay, so what about this is going to be my future with Crohn’s disease. And when I realized that, using the tool, it might be a future that included additional surgeries or other maladaptive outcomes if I didn’t make better decisions that empowered me to say, Okay, this is a personalized choice for me now. And it’s setting me up for better success in the future with my management of this disease so that I can achieve those future milestones and goals that are so important to me. So really, it swapped the whole decision making process.
Amber Tresca 9:29
Dr. Siegel, Crohn’s disease changes over time. So do you think that CDPATH could or should be done in the same patient more than once? Is it something that we could look forward to being incorporated into a regular management plan?
Dr Corey Siegel 9:48
We’ve thought about this, it’s it’s a great question meaning okay, you know, I had the test five or six years ago and I’m still doing okay, can we kind of reset and do it again? The answer it probably could be done. But we’ve never tested it that way. And it’s not approved to be used that way. I would love, you know, further research on this to explore if it’s something that you can do repeatedly over time, but it was really intended for one time use of okay, you know, today’s the day that we’re going to understand what the risk of your Crohn’s disease is.
Dr Corey Siegel 10:21
And I love how Jess said that, that it’s a personalized risk tool, that we are really starting to move into this era of personalized medicine for you what does the next few years look like? And then beyond that, you know, as much as I’d like to believe the tool could predict even further out, it’s just not something that we had tested, and are ready to commit to but it would be something to explore in the future, it would be great to understand after somebody had a surgery, what their chance of needing another surgery was. So we have started doing some research around that angle, but haven’t proven anything.
Amber Tresca 10:56
Yeah. Sometimes there’s very long follow up times with with some tests or with medications, as we know, is that in the works for this as well, too? Is there, is there a 10 year plan, I guess, is what I’m asking.
Dr Corey Siegel 11:11
Yeah, we’re gathering information now. So we’re doing further research on it really to see if there are other markers that might make it even a more accurate prediction for the future. And we can also start to look at, you know, what might happen a longer period of time. You know, it’s interesting, Amber, when we develop this, and you asked how it all started and how we started thinking about it.
Dr Corey Siegel 11:31
Once we started developing the tool, we met with patients and did focus groups with numerous patients, to try to get feedback on what’s important to them. And this tool was really designed in collaboration with patients, because it’s meant to be shared with them, it’s not meant to be one of these blood tests that just goes to your doctor and the doctor gives you the result. Or your you know, doctor or other providers, it’s meant to be something that you look at with a patient, and you start to discussion about next treatment.
Dr Corey Siegel 12:00
And when we talked to them about length of prediction, you know, we settled in a three year length, because beyond that was hard for people to think about meaning Gosh, five and 10 years, so much is going to change my life. And so much is going to change with the the nature of the field of Crohn’s disease and the world in general, that three years is where it settled out. This actually was done in other disease states as well, looking at how far people wanted to predict. And if you get too far becomes less meaningful. Yeah, where something that’s within the next few years, in this case, three years seem to be the right period of time.
Amber Tresca 12:55
Jessica, when you saw the results, I’m assuming that you had full access, was it something that you could understand that you could poke around in and it made sense to you?
Jessica Caron 13:06
Yeah, absolutely. So when I got my results, I did not know how important it was going to be for me to actually have something that was tangible I could hold in my hand, and I could sit next to my doctor, and the two of us could look at it together. And it leveled the playing field. We’re both working from the same information. And it’s my information. And it helped answer questions for me, which was mainly what is that next three to five years gonna look like because I wanted to make some big decisions for myself, I wanted to have children, I was getting ready to get married. This was a pivotal point in my life.
Jessica Caron 13:46
So when I actually got to hold that, that result and look at it with my doctor, it was it was clear, it was obvious to me and what we needed to do. And as a result, I actually felt empowered to make a treatment change, which is not going to be everyone’s outcome, you know, but for me, that was where we were. And that was a part of why I think my doctor who at the time was Dr. Cory Siegel that we have on the show right now because I was a part of those early. It was many years ago that I amazingly still remember that moment. And Amber, how many doctor’s appointments do we have, where we sit and we’re looking through pamphlets?
Amber Tresca 14:24
I don’t count anymore. It’s depressing.
Jessica Caron 14:25
I know, we can’t even keep track of how many different sorry, Dr. Siegel. I can’t keep track of all of our different appointments. But you know what’s wild is I’ve never forgotten this one. Like when I was asked to give some some share some thoughts. I knew immediately what I would say because I still remember exactly how I felt when we went over those results because I felt really empowered in my decision making process.
Jessica Caron 14:48
I felt that finally I was on the same exact page and had that level playing field and I wasn’t confused in our decision making process. I wasn’t coming to it with less than cremation, my physician, we were together. And, you know, as a result, I made a decision, and I’m really happy with and I think ultimately changed the course of my experience with Crohn’s disease, because it was just such a pivotal moment. For me, it was really lucky.
Amber Tresca 15:19
That makes sense. Jessica, I think you and I are maybe alike in that we both want to know, kind of everything about everything, especially when we’re making decisions. So I have a question about the patient experience that might be not quite as reflective of the way that you and I think, but there are a lot of people that do think differently, of course.
Amber Tresca 15:44
So there might be some patients who would say that they don’t want to have this test done. And the reason being that they would maybe prefer not to have their crystal ball, not to know what’s going to happen in that in the next several years, or what might happen, because obviously, nothing is 100%, they also might not feel that knowing the results would make a difference in their lives. So Jessica, I’m wondering, if you have any thoughts on what you would say to someone who is thinking more like that about a prognostic tool for their Crohn’s disease?
Jessica Caron 16:21
I think that’s a great question and the right question to be asking, because it gets at the fact that we need to, like quash this myth that all chronic illness patients are the exact same person, right? We are complex individuals with unique needs, we all bring different thoughts and opinions and experiences to the table. And what we need is more tools and more options that meet us where we’re at.
Jessica Caron 16:21
So for me, this tool was meeting me where I was at, you’re right, it gave me what I needed, which was more information to make a decision. But if that’s not where that patient is at, if that’s not what they want, then, you know, then they don’t need to engage in this tool. But I would say, if it’s out of fear, like if it’s kind of one of those situations where it’s like, I don’t want to know, right, I would encourage to keep thinking on that. What do you you know, there’s so a lot of power in knowing, because it really does help inform and set up for best success in the future. Because that future is going to come at you no matter what.
Jessica Caron 17:25
So if you can arm yourself with the best decisions possible to be as successful as possible, do it. And if you need to get some support, you know, we know so often that this is a lonely journey sometimes. So if you know if you need to get some support, to use this tool alongside your loved ones, and your village, do it. But you know, we can’t think that there’s a one size fits all tool in the management of Crohn’s disease. As much as I think Dr. Siegel wishes he could bring that to us. I think we just need lots of options and get those options in front of the right patients so that they can make the right decisions for them.
Dr Corey Siegel 18:01
And but can I add something to Jess’s comments, too…
Amber Tresca 18:04
Oh, yes, I was definitely going to ask you to add your thoughts. Go ahead.
Dr Corey Siegel 18:07
So two things, you know, one, it’s not a crystal ball saying you’re going to have complications, it’s a crystal ball saying you’re predicted to if we don’t treat things adequately, right.
Dr Corey Siegel 18:17
So, you know, we have really great medications for Crohn’s disease far better than we did a decade ago. And certainly, you know, amazingly better than we had, you know, 20 years ago, and they’re only getting better, you know, new medications, you know, your you and your listeners have seen them getting approved, you know, on a regular basis now, which is really exciting. But those medications don’t treat these complications, you know, to wait until the strictures occur, all abscesses occur, or fistulas occur. That’s not what these medications, do. They treat inflammation before those complications occur.
Dr Corey Siegel 18:53
So you know, I would, you know, you know, I would argue that nobody wants to get scary information, that your disease course is going to be difficult. But it’s better than waiting until those things happen. And they’re irreversible without surgery in many cases. So the whole idea here is to be proactive and preemptively treat before these things occur. And that’s really where I think the value of CDPATH is, is let’s find the folks that we think are most likely to have complications, and let’s prevent them from occurring beforehand. And this tool won’t do that. But this tool can help aid that conversation with your provider so that you have the option of saying, okay, I get it. And I think treating now is a good idea as opposed to waiting for something and taking my chances later.
Amber Tresca 19:39
That’s a really important distinction. So thank you for answering that question. Dr. Siegel. Could you tell me how you think at this point, this test might work for people of different ethnicities?
Dr Corey Siegel 19:51
Yeah, I wish we knew more about this. There’s definitely been some global interest in using this tool and other similar tools and Looking to predict outside of just a population in the United States.
Dr Corey Siegel 20:05
And although this was tested at a number of different places across the country from from different patients, it still is predominantly, you know, white population that was that was tested on, there’s nothing to think that it wouldn’t be appropriate and other racial and ethnic groups, it just hasn’t been tested appropriately. So and that’s part of what we’re doing now. And this nationwide study is really trying to understand how it behaves in a more diverse group of people.
Dr Corey Siegel 20:34
So while I wish I can say, oh, it works for everybody, I could really only comment on the groups of patients that it was tested in initially, and hope that we’ll see results that are more broadly applicable to, you know, people, not just you know, here in the United States, but really anywhere. Sure,
Amber Tresca 20:53
Yes. Because IBD is unfortunately, a worldwide disease. Dr. Siegel, How can patients learn more? Who should they ask about this?
Dr Corey Siegel 21:02
Sure. Well, you know, we’ve partnered with Takeda Pharmaceuticals on this product. And I’m really thankful to them that they offer this as a free test for patients. So I thought this was a very generous thing that they did to try to work in the IBD space, not just developing medications, but also thinking about how they can help the field in general.
Dr Corey Siegel 21:23
So the test is available for free. It’s open to anyone over 18 years of age who’s had a diagnosis of Crohn’s disease within 10 years who don’t have a complication. The further details are on the website that’s been created called CDPATH, you know, Crohn’s disease, path.com. And there’s pretty good information there, that it’s relatively new still, so their providers may or may not know about it. So I encourage patients to take this website to their providers and show them.
Dr Corey Siegel 21:54
And if their providers still need some help, they can talk to the representatives who work with Takeda who can help make sure they know what labs to get to how the test is done. It’s pretty straightforward, there’s a form to fill out. And there are many labs that can accept that form. It’s a blood test. And that’s all that’s done here. And then some informations completed by the provider about where their Crohn’s disease affects their bowel, as you and others know, it can affect anywhere throughout the GI tract. And that’s a part of the formula that gives us the prediction. And then within a week, you typically get the results back that produce a graph that they can review with their providers.
Amber Tresca 22:32
That’s amazing. A week seems like such a short amount of time to get so much information. Thank you both for sitting with me and discussing this new tool. It sounds amazing.
Amber Tresca 22:44
Before I let you go, though, Jess I want to know like it’s been a while since we’ve seen each other and your kids are growing up. What are they into these days? What’s going on at your house? And How loud is it?
Jessica Caron 22:55
Oh, it has been a while and you’re not wrong. It’s very loud in the house. My boys are now 10 and seven and a half, you can’t forget the half. And they are both super busy. All over the place. soccer, basketball, you name it. So we’re just trying to live in the moment with them. And yeah, it’s quite a ride, but we’re loving it so much. Thank you for asking.
Amber Tresca 23:25
Oh, yeah, of course.
Dr Corey Siegel 23:27
You know, Amber, when I when I see Jessica and see how well she’s doing it, it reminds me of why I do what I do. And I hope that all your listeners have providers who feel the same about them that seeing somebody when they have a new diagnosis, that it’s really scary. And then watching them, get married, have kids have an amazing career become an advocate for other patients. You know, this is why we work so hard to get our patients with Crohn’s disease, and of course, all sort of colitis that are as quickly as possible. Because when when you have diseases like this, that affect young people, the last thing we want is for them to interfere with their lives. So anything that we can do to intervene and treat them appropriately and learn about them. And I’ve watched just as kids grow up to is just incredibly satisfying.
Amber Tresca 24:14
Well, Dr. Siegel, thank you so much for all you do for the community. This is huge. And so when I learned about it, I immediately lobbied to try to get you on the show to learn more for myself and for all people living with Crohn’s disease. So thank you for all of your work in this space. The patients really do appreciate it. And it makes us feel more hopeful.
Amber Tresca 24:36
And Jessica, it’s wonderful to see you today. And I hope we get to see each other in person sometime soon. And thank you so much for coming on about IBD.
Dr Corey Siegel 24:44
Thanks for having us.
Jessica Caron 24:46
Yeah, thank you, Amber.
Amber Tresca 24:52
Thanks to Dr Corey Siegel and Jessica Caron for taking me through the ins and outs of CDPATH. You can follow Dr Siegel on Twitter at @DrCoreySiegel. You can follow Jessica Caron across all social media as ChronicallyJess as well as on her web site chronically-jess.com.
Links to a written transcript, everyone’s social media handles, and more information on the topics we discussed is in the show notes and on my Episode 128 page on AboutIBD.com.
Amber Tresca 25:28
You can follow me, Amber Tresca, across all social media as About IBD. Thanks for listening, and remember, until next time, I want you to know more about IBD.
About IBD is a production of Mal and Tal Enterprises.
It is written, produced, and directed by me, Amber Tresca.
Mix and sound design is by Mac Cooney.
Theme music is from Cooney Studio.