Epidemiology, Big Data, and Biologics in Pregnancy — About IBD Podcast Episode 198

Epidemiology, Big Data, and Biologics in Pregnancy — About IBD Podcast Episode 198

Leave a reply

What does a pregnant woman do when they need a biologic medication, but pregnancy isn’t included in drug trials? Dr. Sonia Grandi and Dr. Cristina Longo talk to Amber Tresca about the BIONIC study, a groundbreaking project using decades of real-world data to understand how biologics affect a pregnant woman and her baby. The BIONIC study is designed to empower patients to make confident, evidence-based decisions about their own health and their children’s future.

Apple Podcasts | Spotify | Overcast | Castbox | Amazon Music | All Other Podcast Apps

Find Sonia Grandi, MSc, PhD at:

Find Cristina Longo, PhD at:

Find Amber J Tresca at:

Find Mac Cooney (mix, sound design, and theme music) at:

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

Transcript

Transcript

[00:00]

[Music: IBD Dance Party]

Amber Tresca: I’m Amber Tresca, and this is About IBD. I was diagnosed with ulcerative colitis as a teen and had J-pouch surgery 10 years later. Now I help people with Crohn’s disease and ulcerative colitis understand their disease and feel seen. On About IBD you’ll get real talk on symptoms, treatment, and life with IBD—straight from patients, caregivers, and experts. You’ll learn, feel less alone, and even have a laugh along the way.

[00:43]

Amber Tresca: Today, we’re focusing on medical research and why it’s important that patients participate in and support this work. I have two epidemiologists with me who are part of the Bionic Study. My first guest is Dr. Sonia Grandi. Dr. Grandi is a scientist at the SickKids Research Institute and an assistant professor at the University of Toronto. She is a perinatal epidemiologist whose work focuses on maternal and child health, including adverse pregnancy outcomes, severe maternal morbidity, cardiometabolic health, and pharmacoepidemiology. Her research leverages large administrative and claims databases to answer complex questions using advanced causal methods. Dr. Grandi, welcome to About IBD.

Dr. Sonia Grandi: Hi Amber, thanks for having us. Looking forward to the conversation.

Amber Tresca: Absolutely, me too. Also with me today is Dr. Cristina Longo. Dr. Longo is a pediatric epidemiologist and assistant professor at the University of Montreal. Her research sits at the intersection of big data, epidemiology, and clinical care, with a focus on improving outcomes for children with asthma. She uses advanced methods like pharmacoepidemiology, causal inference, and machine learning, and is especially interested in how we can better engage children and youth in research as part of a learning healthcare system. Dr. Longo, welcome to About IBD.

Dr. Cristina Longo: Hi Amber, thank you so much for inviting us to your show. And hi to everyone at home who’s listening in.

[02:30]

Amber Tresca: So, I’m so excited to talk with the both of you. I always love to talk to smart women who are doing great things. But I think we need to start with some basics—not only for the listeners, but also for myself. So, I wonder, could you first start with what is an epidemiologist and what do you study? And I’d love to get an answer from both of you. Dr. Grandi, if you could start.

Dr. Sonia Grandi: Great, thanks Amber. So, I know epidemiologist is a term that maybe most people are not aware of, but maybe have become more familiar with based on the COVID pandemic. But I think to describe epidemiologists—what they do—they’re essentially scientists who study how diseases and health conditions occur, how they spread, how they can be prevented, and more simply, how patterns of health occur in populations. So we look at who’s getting sick, why they’re getting sick, and what we can do to prevent it. So, most of our work includes looking at data to understand trends, figure out what may increase certain health conditions, and really to use this information to help better shape treatment strategies, policies, and public health decisions. So, if I had to say in simple terms, we help uncover the “why” behind health outcomes so we can ultimately keep people and communities healthy.

Amber Tresca: I love that. That was a really great explanation. But I wonder, Dr. Longo, if you have anything to add to that.

Dr. Cristina Longo: I would just add that there are different types of epidemiologists. So, there are some that focus on certain types of populations, certain diseases, and health interventions. So, Sonia and I are focused on the health of pregnant women and children, and we evaluate medication safety and effectiveness. And I’m specifically focused on the prevention and management of childhood asthma. My research program is taking me to pregnant women because, you know, we believe that prevention actually can occur prior to a child being born. So, they’re very linked.

[04:44]

Amber Tresca: And that makes so much sense, and we’ll get into Bionic because this all folds in together. Also, I want to ask you both what set you on the path to becoming an epidemiologist? I would hope that little girls would say, “Yes, I want to be an epidemiologist when I grow up,” but I don’t know if that actually happens. So, I’m wondering if there was an experience or if you had a mentor, something like that? What pulled you into epidemiology? Dr. Longo, let’s start with you.

Dr. Cristina Longo: It’s funny because my path was definitely not linear. It was all over the place, but I’m going to give you the linear story. So, I think my path was definitely influenced by experiences and mentors. And if I were to go back really to when I was a child, my brother suffered from preschool asthma, and he often had to go to the emergency room with asthma attacks. I remember growing up, being—it was extremely stressful. My mom waking me up in the middle of the night: “Okay, we have to go to hospital, he’s having an asthma attack.” And it was great—I mean, the children’s hospital here really managed him really well. And I think that’s what really spurred my interest in respiratory disease and medicine. Thankfully he outgrew his symptoms by the time he was eight or nine, which is actually quite common in childhood asthma. But all this to say that it kind of brought me into this path of, okay, I’m interested in medicine, I’m interested in respiratory disease and how we can help children. At McGill, I ended up in a pre-med program, and part of this program was like lab-based research, which is like pipettes, you know, samples, mice—and I absolutely hated it. Not being in contact with people, I was really sad. It was depressing for me. And I 100% admire all the people who do basic science research, you know, in the labs and they’re really nitty-gritty, like really understand a lot more about mechanisms of disease and things like that through basic science, but it was just not for me. I ended up, you know, at the last year of my undergrad, going to the Montreal Children’s Hospital, volunteering, you know, being with the patients, keeping the children with chronic disease company during their stays, and also supporting the parents in the event they needed help, you know, on a—in an ICU admission, for example, I was there to like help support the family. So that was really a nice experience. So my interested, you know, my interest in, like, medicine and prevention and health systems and treatment started there. So, you know, how can I stop this from happening to these kids? You know, how can I prevent this from happening? And so that led me to meet with an epidemiologist at McGill in my last year of my undergrad and, you know, kind of asking like, how—what type of training do I need to make a difference? It sounds kind of corny, but it is what it is. So I met with her and, you know, I just wanted to help solve these complex problems in pediatrics. And she told me, you know, you can—you can do an epi—epidemiological degree, get, you know, necessary training and then, you know, focus your research program on pediatric problems. Health problems, I should say. So, you know, this idea of uncovering new evidence and knowledge to help prevent but manage disease at the same time in children was super interesting to me. And so I met somebody else in pediatric asthma here at where I work now actually, my mentor is here, Francine Ducharme, and she led me on the trajectory in pediatric asthma. And so here I am doing that today. Which is—it’s interesting, it comes all full circle, but there’s a lot of people and experiences involved in where I am today.

Amber Tresca: Right, 100%. That makes sense. And bonus: no mice and no pipettes, right?

Dr. Cristina Longo: Thankfully! Sorry to the people who do that. I admire you.

Amber Tresca: Well, there’s a lid for every pot. Dr. Grandi, how about you? What set you on the path?

Dr. Sonia Grandi: Sure. So I would say mine—I’ll make it short and sweet—but mine was definitely not linear. I trained as a nutritionist and did a master’s in nutrition, so I thought I was going to become a clinical nutritionist telling people how to eat right. And then I actually started working as a research coordinator for a cardiology—a cardiologist at a hospital center. and I worked very closely with somebody who was doing their PhD who in epidemiology. And so—I’m going to nerd out a little bit—but we got really super into had discussions about epi and what it meant and how to like design a studies and how to analyze studies, and it really interested me and I was like, this is what I think I want to do. And so, you know, I continued working for a little bit, had a couple kids and then I thought, you know what, if I really want to become an epidemiologist, I need to get a PhD. And so I essentially decided to apply to—to the PhD program in epidemiology. But what specifically got me into perinatal epidemiology—so studying, you know, conditions that occur in pregnancy—was really my own experience with pregnancy and sort of all the unanswered questions that came up for me that I couldn’t always find the answer for. And so I think that’s really what inspired me, and I think, yeah, having really great mentors to help guide me along that path. Which, you know, in hindsight was probably a little bit ambitious after having had two kids and being highly sleep-deprived, but I—I definitely wouldn’t go back. I’m so happy I decided to become an epidemiologist. I really love what I do.

Amber Tresca: You were reading my mind because I was going to ask you a follow-up that wait a minute, like back up, you got a PhD after having two kids? Like, what?

Dr. Sonia Grandi: Yes. I know. I definitely—I was definitely the oldest person in that class. But you know what? I just knew what I wanted, and I think that also helped me to like be really focused and super driven, right? I knew I only had X amount of hours to do stuff compared to people that, you know, didn’t necessarily have families or—or young kids at home. And so I think it actually helped me to create a really good work schedule that has definitely benefited me now, especially now with all the competing priorities. So yeah, was probably—not in the moment it was probably not the best, I was definitely questioning it, but I think I had such an amazing and supportive partner who helped out and lots of family to help support it, otherwise I don’t think I could have done it.

Amber Tresca: Yeah, and I have a close friend that always says if you want something done, ask a busy person. So, yeah, I understand.

[08:14]

Amber Tresca: So, Dr. Longo, part of your work focuses on engaging children and young people in research, which is amazing. So, what does that look like in practice, and can you tell us why it’s important to you?

Dr. Cristina Longo: So maybe—maybe I’ll start with why it’s important. Children and young people have, you know, different experiences, different health priorities than adults. And historically, you know, they’ve been underrepresented in research, and often times, you know, the majority of what we do in practice is extrapolated from adults. And I—and we say this all the time, like children are not small adults—they’re different. And in actual fact, they would be different actually at each stage of their development. So young children, school-age, you know, pre—pre-teens as we all know as mothers, we know they go through these developmental phases and what matters to them most at each of these phases is different. And even though we recognize this as a problem, you know, that they’re underrepresented, it—it can be a little bit of a, you know, a challenge to engage them in research depending on their age group. And each age group is—has different challenges. You know, especially the younger ones who are under age seven because, you know, their attention spans are not the longest at that age, and so getting them to participate can be somewhat daunting. So sometimes researchers will, you know, maybe not get them to participate, they might get their parents to participate because it’s—it could be slightly easier. So what do I mean by engage? So this is actually, I think, we use this term quite a bit, but it—to define it is actually, there’s not one definition, I would say, you know, we can either like engage them at the very outset of a research project—so we talk to them and their parents, let’s say maybe after a visit for us, you know, like with a pulmonologist, we can just say, hey, we have this research project, or what really matters to you in your care? You know, are you as satisfied with how you’re being, you know, cared for? Are you happy with how you feel? Things like this, you know, to help kind of identify where the gaps are in the treatment, for example, or in how we’re doing our research study. So not only does it start at the outset, but it can also happen during the research project depending on how engaged, like, the patients are, if it really matters to them, the research project themselves. So to give you a concrete example, we have a—developing a study now on how to define remission. And this is, you know, common amongst most immune-mediated diseases, right? How do we define remission in children? Because we have some working definitions in adults, but we don’t have, like, a proper definition in children, right? Because what matters to them most can be different from what matters to adults. So, and this came about because we were talking to one of the children with severe asthma and his parents, and he basically told us, “You know what really matters to me? I just don’t want to take medications anymore. Like, that’s what really matters to me, I just don’t want to be taking medications, I want to be playing soccer without having to struggle to breathe.” Those were his main priorities. And if you look at, you know, how we’re currently defining it objectively, there is no such thing. It inspired us to kind of start this project where we’re now, like, recruiting patients, recruiting younger children, recruiting, you know, the different developmental stages to understand, in their terms, what—how they would define remission. Of course, we’re not using the word remission, but we’re going to ask them, you know, what matters to you most when you feel good, what do you feel like? You know, things like this so we can identify, you know, what really matters to them most and how we can finalize a definition for clinical practice and for future research. And so this is like an example that I can give you, and in terms of how we do it, because I’m sure that’s going to be the next question. Because for younger children—so what we try to do is get them to do like activities, like art-based activities—so like coloring, and then they’re like—then you can ask them questions while they’re doing the activity. And you’d be surprised to, you know, how they open up a little bit more to you and start telling you a little bit what they think about, you know, their disease, how they feel. In the older age groups, of course, they’re—they can have proper discussions, so we’ll have focus groups and things like that to ask them about, you know, their disease, how they manage their disease, what matters to them most in their treatment plans, things like that. So that’s—that’s a concrete example I can give you of a current project that—that we’re doing. But I—I should also say that there are no standardized methods to, like, really engage them, but there’s a lot of research on it. Like, we really want to learn the best way we can engage the children in research and continue having them involved in our research projects.

Amber Tresca: It does sound a little bit, though, like you are building the plane while you’re flying it.

Dr. Cristina Longo: Yeah, I mean, you know, I think especially in the younger age groups. I think in the older age groups we have some established methods that we use. So the younger age groups are kind of dependent on the research question and how we can keep them, you know, involved. So yeah, there’s been some research on social media—how can we use social media to better engage them? There’s different ways, you know, tools that we’re trying to see can be useful in this—in this context. But I—we usually find, you know, children and their parents who have some sort of chronic disease are very much more involved or want to be involved in research, so it’s just a matter of, you know, using the right tools and getting them involved.

Amber Tresca: Of course. Yeah, that makes perfect sense.

[11:53]

Amber Tresca: And so to pivot to Bionic, because you’re both involved in the Bionic Study—Dr. Grandi, I’m wondering if you would explain: What is Bionic, and what are you looking to understand from this research?

Dr. Sonia Grandi: Yeah, for sure. So, many women who are at the age of being able to conceive and also have long-term inflammatory conditions like autoimmune conditions and asthma know that it’s difficult to manage these conditions, as both you, Amber, and Cristina know having, you know, both autoimmune conditions. And they often require multiple treatments, multiple visits to specialists, concerted care across the healthcare teams. And especially in pregnancy, if inflammation isn’t controlled, it can lead to really serious health issues for both mom and the baby. In the last 10 years, there’s been really major improvements in the types of medications that are being used to manage these conditions, and specifically biologics have made a huge difference in how well these conditions can be treated and managed. But because pregnant people are often, as Cristina mentioned for children, they’re often left out of clinical trials that we use to approve the medications. So essentially we don’t really know how safe or effective they are during pregnancy. And so as you can imagine that creates a lot of anxiety. Many women decide to stop their medications because they’re afraid if they don’t, it could potentially put my infant and eventually even my child at risk of a future health condition. And they don’t really think about essentially themselves, and so often you’ll see women will be thinking about their infants first before they actually prioritize their own health. And so what really motivated Bionic was that we really wanted to understand how these biologic medications affect pregnant women with autoimmune diseases or asthma, and really how they may impact the health of children and infants as well as moms during pregnancy. And so what we’re doing is we’re taking large population-based data from Canada and the US, and so data that’s collected when you go see a healthcare provider in both, you know, private and public insurance claims to be able to answer this question for the largest group of people or the largest proportion of the population. And so our goal is really to compare health outcomes for women who continue using biologics during pregnancy versus those who stop, and whether or not it has an impact on risk of health outcomes in moms, babies, and children. And what we really want to understand is how that differs across various backgrounds—social and ethnic backgrounds as well as, you know, social circumstances. And what really makes this meaningful, and sort of ties into Cristina’s previous response, is that we’ve brought together researchers, clinicians, and most importantly patient partners from the get-go. And so everybody’s expertise and lived experience is helping us to make, to produce the most robust evidence that can actually help patients and their care teams make informed and really confident decisions about medication use during pregnancy.

Amber Tresca: So ambitious, also so needed. And I just want to clarify a point, though. Like, there’s not an intervention here, right? You’re looking at the data—like, things are unfolding as they unfold, and then what you’re doing is taking the data after—or I don’t know how long you’re following people for, but you’re following them through the pregnancy and then beyond.

Dr. Sonia Grandi: Yeah, so that’s the one thing that’s different from a, you know, a trial where we recruit patients and give them, you know, intervention A or intervention B. What we do is actually take data that’s already been collected and not necessarily for health research purposes—it’s mostly as I mentioned when you go see a healthcare provider, we—it actually gets put into a database which Cristina and I use to answer questions for research purposes. And of course it’s anonymized so we don’t know who these people are or, you know, we—we’re not able to identify these patients. But what we do is essentially compare those that stop versus those that don’t. And the really important piece is that we’re actually looking at trends that occur in real world, so we’re not actually creating sort of this artificial environment like we do in clinical trials where, you know, somebody gets given one versus another and followed. And so what’s nice also about this data is that we can have a follow-up for a really long time. So in contrast to a clinical trial, there’s just not enough money and often times enough money to fund the studies to be able to follow these people for really long times. And so you’ll see trials will end, you know, five years in, not usually ten years, but sometimes you’ll see that, but they’re very short periods of time. And so with this data that we’re using we actually have follow-ups of up to thirty years for people and their children. And so that’s really sort of the advantage of using this data versus, you know, conducting a clinical trial.

Amber Tresca: Right, sure. Yeah, that makes so much sense.

[15:15]

Amber Tresca: I also want to mention that Bionic includes a patient partner advisory committee, as was already mentioned. And I should say that I am on that committee—that’s how we all know one another. And so I’m wondering, Dr. Longo, if you would explain: Why it is important to you to have patient partners on Bionic?

Dr. Cristina Longo: So, you know, a lot of people recognize our expertise, but we recognize that patients have their expertise. Patients are the experts in the—in their own disease trajectory, you know, the healthcare system, challenges that they face. And so this is super important. This is an expertise that, you know, most if not all research projects need. So for us, it was very important that, like Sonia said, that we needed to have this committee to help us, you know, not only, you know, refine our objectives at the very beginning—so they helped us, you know, refine, you know, the outcomes that we were looking at, our objectives. They also informed—they’re also going to inform, because, you know, we’re at the very beginning parts of the project, but they will inform the design and the execution of the study because, you know, there are certain things that were—like for example, we have to define disease flares in the data that Sonia mentioned. This is, you know, could be complicated, you know? So our patients will help us define the outcome by telling us a little bit more about what they consider a flare, how they identify whether they’re having a flare, what steps they take after, you know, they identify having a flare—so what healthcare providers do they go see? Do they go see their pharmacist? Do they—and this will help us, you know, kind of develop an algorithm in our data that can help us better identify flares, which is one of our main outcomes for the effectiveness component of our project. And so and in addition, of course, you know, our patient partners will also help us interpret our data and co-develop, you know, the messages around what we find because, you know, Sonia and I are scientists, sometimes we say scientific jargon and we’re not realizing it. So having a patient there saying, “Actually, this is what we should say, and this is what’s going to, you know, reach the public better,” that would be great, you know? This is exactly why we need the patients there to help us make our research relevant and also help them, you know, understand what we develop—you know, generate in terms of results—and use it at the end of the day, that’s what we want, you know? To inform their—their decisions to help them empower them to make those decisions. And so this is like an example I can give you of why it’s so important to have patient partners involved.

Amber Tresca: Of course. Yeah, that makes perfect sense.

[16:16] [Music: About IBD Transition]

Amber Tresca: Alright, we have to talk about something that is outside of the research but important to it, and that is research funding. I only see a small part of this, thankfully, but I know that it is a challenging job and it is a very long process. So I wonder if Dr. Longo, if you could give an overview of how a study might receive funding.

Dr. Cristina Longo: Oh man, is it a long process, you’re correct. But so—a tough, a loaded question. Oh man, is it a long process. But so maybe I can start with what we do first. So first we identify a research problem. Then we write a project description, you know, to describe ways in which we want to address this research problem. And we also have to talk about the work that we’re going to do, who’s leading it, who—our team, you know, that we have the capabilities to do the work, and how much it costs, generally so. And then based on this project, we then try to identify potential funding opportunities and funding organizations that may be interested in funding it. And so there’s different avenues we can take. We have, you know, the government agencies, so that’s the one that’s funding us currently for Bionic, we’re funded by the Canadian Institutes of Health Research. Then we have other types of avenues like foundations and charities. We have non-profit sometimes that fund research, industry, so sometimes, you know, if the intervention is pharmaceutical, they may be a good choice to fund the—the grant or the—the research. And then there’s also, of course, you have internal programs sometimes at our institutions—so SickKids has certain programs, Sainte-Justine where I am at the hospital has certain programs so we—that we can apply for funding for little projects, I wouldn’t say large but smaller projects. And so once we’ve identified where our project fits, like is likely to fit or likely to get funded, then we start the process which is essentially long documents that we have to prepare. We have to get CVs ready from everyone involved. We need, you know, budgets, justifications, letters of support, of course our project description, lay summaries, things like that. So we have to, you know, get this all ready, then we submit it. It gets evaluated by an evaluation committee typically, and I’m—I’m guess in general there are mostly evaluation committee, I don’t really know how it works in industry so I’m just telling you my general experience with the other types of avenues. But it’s often reviewed by our peers, so we have about two to three peer reviewers that look at our—our grant, our project description and give us, you know, comments and a score. And from this, you know, we—it depends on how much money they have allotted for each competition to fund the projects. But if you score quite high, and of course they’re comparing you to the other projects that are submitted in that—in that same competition, then you may or may not get funding depending on, you know, again how much of money they have for the competition and that also determines how many projects are funded. So generally if you have a very, very good score then you’re, you know, hoping that you’re going to get the funding. But if not, you may not get it, which is actually pretty common on the first shot. So when you submit the first time, we are often, you know, trained to prepare for rejection. So we’re rejected, but obviously the score and the comments help us, you know, address, you know, things that may be unclear, and so we prepare for a resubmission and then it—often times we resubmit maybe once or twice, sometimes three times if it’s a really good idea but there just needs to be refinement, and often times we hope we get it. Sometimes it never gets funded and so we have to look for specific calls, like for example there’s societies that may be very interested in a topic but not the, let’s say, like a government project competition that’s very general. So in that case your—your idea may be more likely to align with a specific call for a project versus like the general competition, and that gives you a higher chance of getting funded. So there’s these types of things that we look for when we submit for—for funding.

Amber Tresca: Right, and for—I know it’s going to depend on the study and the scope and all of these type of things, but usually you’re going to be trying to get—you’re trying to get funding wherever you can, right? Like you’re not just going to one source, you’re—you’re pulling on all the levers.

Dr. Cristina Longo: Yes, I would say so, and often times sometimes there are budget cuts and so when that occurs of course we have to look for alternative sources of funding, and this is why it’s good to always diversify, you know? I—Sonia and I have submitted to other things as well, not just government funding opportunities, but, you know, foundations, charities, societies that offer, you know, funding for researchers like us.

Amber Tresca: Right, which is why it’s so important that we have those groups in this space that can raise these kinds of funds and can support and hopefully fill in some of the gaps of where the government funding doesn’t always come through.

[20:17]

Amber Tresca: Alright, so Dr. Grandi, I’m wondering if you could tell us: What are you hoping for? What do you hope that clinicians, researchers like yourself, and patients are taking away from Bionic?

Dr. Sonia Grandi: Sure. So I think, you know, for Bionic, our hope is that both patients and clinicians have the confidence and information they need to manage women who have autoimmune conditions and asthma during pregnancy. And for people living with these conditions, you know, as I mentioned, pregnancy can bring a lot of uncertainty, especially when it comes to deciding whether or not to continue or switch their medication. So we want to be able to give women the tools to be able to at least make an informed decision about whether or not they should be changing their medication, switching their medication, but also to be able to feel confident enough to go to their healthcare providers and have a discussion about what to do next. And so really we just want to be able to give them that evidence that’s really lacking, you know? The evidence that they can say, “Hey, I read this, and I’d like to discuss this with you about how we should actually manage my condition during pregnancy.” And ideally the main—the main goal is to actually have these conversations before you get pregnant, of course for those that are planning, because we know that there are large proportion of women that don’t plan a pregnancy. But to really have these conversations early and to be able to have multiple conversations—it should be an iterative type of situation or scenario where, you know, women are able to have that information and the clinicians are able to tell them, “Okay, this is the current evidence, let’s talk about it and make an informed decision about how you can use these medications safely in pregnancy in order to sort of balance the benefits and risks for both you and your unborn child.” And so I think that’s really the ultimate goal for us is to be able to give clinicians and patients the tools and the confidence to really make those decisions without, you know, that decision regret or—or feeling of did I make the right choice?

Amber Tresca: Right, right. I love that you said confidence. I think that’s a big thing when you’re entering into these discussions as a patient and you’re hoping for some shared decision-making because there is a power imbalance there whether or not we actually talk about it out loud, I think a lot of patients feel that. And so coming in with information sometimes it—it can be a little daunting. So I love that you said confidence. I think that’s a great word. So Dr. Longo, anything else to add?

Dr. Cristina Longo: You—you stole the words out of my mouth. I was going to say that, you know, our—we called our project Bionic to pay homage to all of the women who are really bionic—like they, you know, struggle—like this is a struggle, you know? And we want to empower them. Like, Bionic is really about empowerment. So this is exactly, you know, the follow-up to what you just said, you know, we want them to take control of their health, to have these open and honest conversations with their healthcare provider, and, you know, we see—we want them to know we see them, we see that they’re struggling, you know? And that the struggle is real because, you know, I’ve been through it and it’s not easy, and to have some information that can help you have these conversations and make the best decisions for themselves, whatever they decide the decision is for themselves, is really the goal here and, you know, that’s—that’s basically what we want people to know about Bionic—is it’s about the research but it’s also about empowering the women to make the right choices for themselves.

Amber Tresca: Right, and I love that you framed it that way as well—is that you framed it as the best decision for yourself. Because the decision that I make isn’t going to be the same one that necessarily that you would make, although you and I probably would make, but you know, everyone has different priorities as you talked about earlier with engaging patients in research, you have to understand what those priorities are, they’re going to be individual, and then everyone needs to make that choice for themselves and their families that you don’t have—and that other phrase that—that I loved, I think Dr. Grandi you said that decision regret. I—I love that phrase, I’m going to be taking that forward as I talk to people. We don’t want that.

Dr. Sonia Grandi: Yeah, absolutely.

[22:01]

Amber Tresca: Alright, we know about you as scientists, I’ve gotten to know you both a little bit over the course of our working together—it has been such a pleasure, quite frankly. But I want to know a little bit about you as people. So I’m going to ask you a question—little bit inside baseball—I do give the questions before we get on the line just to make sure that we have a smoother show and that we’re covering everything that we want to cover, but I didn’t give you this question. But it’s a really—it’s a really easy one, so no—no need to get your shoulders up near your ears. But Dr. Grandi, I’ll start with you. What does an epidemiologist such as yourself do for fun? What are your hobbies?

Dr. Sonia Grandi: I love that question because I was actually asking myself that question more recently. As a mama of two, I felt like I—I sometimes have lost track of what my hobbies are because I feel like my hobby has become being a mom and I know that sounds—a mom and epidemiologist and I get it. Yeah, I’m now rediscovering all of the things that I—I still did what I loved but I think now I’m really starting to prioritize what I really love and so, I am a bit of a—I love outdoors and so I really love—I’m a runner, so I love to go running and especially taking my dog out for really long walks in the forest and—and in nature, so I love doing that. Little bit of a nerdy side of me—I really like to puzzle and I love reading novels. So having—that was one of my—one of my favorite gifts this Christmas was an e-reader and I absolutely adore it to be able to read some really great novels.

Amber Tresca: You didn’t have an e-reader before?

Dr. Sonia Grandi: No, I know, right? Because I was old school, I loved having a hard book in my hand. I thought it was—for travel and everything, it’s—it’s become, yeah. I finally gave in to an e-reader and now I’m—I’m happy I did.

Amber Tresca: Yeah, well, gosh, welcome to the dark side. So Dr. Longo, how about you? What do you do for fun?

Dr. Cristina Longo: I love sports. I’m a big tomboy, so like watching sports sounds—so I also have two very young kids. So when I get the opportunity to watch sports, like I’m so happy. So I watched the Super Bowl this weekend—very happy. The Olympics—but I also play sports. So I love tennis, I play squash, and I always make jokes because every time we get rejected from a grant, I’m—I’m like the first one planning a squash meeting so I can just smack the ball so hard so I can get my frustrations out. So that’s like part of my—my hobbies. But of course, you know, like traveling, I love to travel. So those are my—my main things, but yeah.

Amber Tresca: Have there been any special trips? Is there a trip that stands out to you?

Dr. Cristina Longo: I feel like our last—we went to Sicily when I was very large, I was pregnant with my first son and—I was like very large, what does that mean? I was towards the end of the pregnancy, I don’t know how they actually let me travel. I’m not even sure. It was during the pandemic—and it was just—it was towards the end of the pandemic I should say. And it was beautiful. It was just a beautiful trip. I got to see one of my very, very, very good friends who I don’t see often because she lives in Sicily. and we just spent a lot of good times, ate well, beautiful temperatures, got some good walking in, history, historical sites, you know? It was the best of both worlds. So yeah, that’s definitely one of them that I remember.

Amber Tresca: Yeah, Sicily sounds amazing in the dead of winter as we are right now as we’re recording this. Alright, so let’s bring it home. If listeners want to know more about you all and want to know about Bionic, where should they go?

Dr. Sonia Grandi: The Bionic Study will soon have its website, it’s currently being—it’s in progress and it’s set to launch in late Spring, so stay tuned, but you can get the information once it’s available at www.bionicstudy.ca. To connect with Cristina and myself, you can find us on LinkedIn. We have our lab websites and institutional websites, which we’re happy to provide as part of the transcripts for the podcast. And also we’re happy, I just want to reiterate that we’re always happy to connect with women who are living with these conditions and want to share their stories and have a voice in how they manage their condition. So please feel free to reach out to us if you want to be part of the study or just share your story—we always are welcome, welcome anyone to connect, we really love to hear these stories.

Amber Tresca: Perfect. Thank you so much. I really appreciate, first of all, being a part of Bionic myself, but also in the larger sense for the patient community. We really need this data, we really need this information, we need the empowerment for patients and we need the education for clinicians. So thank you both so much for doing this important work. It is going to be so impactful in the lives of so many women and their children for so many years to come. And then thank you also for speaking with me today—it has been such a pleasure.

Dr. Sonia Grandi: Thanks for having us.

Dr. Cristina Longo: Yeah, thank you so much.

[24:12]

[Music: IBD Dance Party]

Amber Tresca: Hey, super listener! Check the show notes to find links and information about the topics discussed in this episode. Plus, get a written transcript and much more on my website, aboutIBD.com. If you enjoyed this episode, please consider sharing it with someone else or leaving a rating in your podcast app. Reviews and ratings help me grow this show and bring you more great content. 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. 

Leave a Reply

Your email address will not be published. Required fields are marked *