Voiceover: This podcast is for informational and educational purposes only. It is not medical care or advice. Clinicians should rely on their own medical judgements when advising their patients. Patients in need of medical care should consult their personal care provider. Welcome to "That's Pediatrics", where we sit down with physicians, scientists, and experts to discuss the latest discoveries and innovations in pediatric healthcare.
Dr. Allison “Alli” Williams: I'm Alli Williams, one of the pediatric hospitalists here at UPMC Children's Hospital of Pittsburgh. Unfortunately, my co-host is not here today, but that doesn't mean that I am not equally as excited to be talking with Dr. Janet Catov, who is here today to talk to us about the MOMI Data Bank. She is an associate professor in the department of OBGYN and Reproductive Sciences and works through the Department of Epidemiology. Thank you so much, Dr. Catov, for being here today. I would love to first start by just telling me your career journey to get you interested in this project and how you got to be where you are.
Dr. Janet Catov: Yeah well, thanks. Really lovely to be here with you today. I'm an epidemiologist. My primary appointment is in obstetrics. I don't deliver babies, but I work with large data sets, so our MOMI database was a real natural fit for me. My own research focuses on women's cardiovascular health before, during, and after pregnancy, and so that brings, so being in obstetrics has been a really good home for me to do the work that I do. So not only do I facilitate other investigators as they consider using our data and biospecimens, but also it's been a source for my own work as well.
Dr. Williams: And have you always been local to Pittsburgh or have you done training elsewhere?
Dr. Catov: Yeah, great question. All my trainings in Pittsburgh, although I'm, although I've been here a long time, I grew up in New Jersey, so I don't know if I would actually ever be considered a Pittsburgher, but I've been in Pittsburgh a long time and did all my training here.
Dr. Williams: I feel like that's honorary Yinzer at this time.
Dr. Catov: Oh, that's nice.
Dr. Williams: I consider myself to be an honorary Yinzer as well. Not from here, but living here now.
Dr. Catov: Yeah. And I had all three of my kids here. Right. So that they are certainly Pittsburghers and a real sense of pride sort of from Pittsburgh.
Dr. Williams: Absolutely. So I was trying to read a little bit about this. It's pronounced MOMI database, is that correct? So it's the Magee Obstetric Maternal and Infant database.
Dr. Catov: That's correct.
Dr. Williams: Can you tell me a little bit more about how that got started and what exactly that is?
Dr. Catov: Yes. So it was really the brainchild of Steve Caritas, who's a senior MFM faculty at Magee and an epidemiologist, MJ Cron, at the time, who was the epidemiologist in the department before me. And so they began really just cataloging all births at Magee and thinking, “Wouldn't this be a great research registry, if you will?” And that's really how it started.
And it, that was back in the early nineties, so really a time ago. Yeah. Our database now is really robust from about including births from 1995 moving forward, and there have been many renditions of that. As you might imagine. There was a lot of manual data abstraction in the beginning. And then as the health system has transitioned to an electronic health record, we have migrated our data collection as well to be aligned with the electronic health record and the way, so that's how it got started, it was really a good idea by two really good people, which is I think, how a lot of breakthroughs might get their start.
So our current rendition, the door into our database, if you will, is a delivery at Magee or a UPMC delivery hospital. So we are now expanding to be beyond Magee. So we actually now also include deliveries at Magee Hamot. And our future versions will include deliveries across the UPMC system. But the door in is delivery, and then we go retrospectively back and get key information from the prenatal record and can also include infant features through discharge from Magee. So we've got a fair amount of NICU data as well. We know for however that it's really, we have information on babies through discharge from Magee. They could be transferred to Children's, transferred home, other places. So that's really the universe of data that we have. And the, the common denominator is a delivery at Magee or a UPMC hospital.
Dr. Williams: That must be extensive at this point in time.
Dr. Catov: Well, it, it is. And, for anyone who does anything with electronic health record data there are also many changes. Right. So something that changes on the clinical side trickles down to affect our data registry. And our approach is a very pragmatic one where unlike just a kind of a data pull from the electronic health record, we actually do some due diligence to curate variables, right? So there might be seven diagnosis codes for hypertension in pregnancy, and we actually curate them, again, using diagnostic codes and some procedure codes into variables so that we can characterize the subtypes of a hypertensive disorder of pregnancy. So we do a bit of that curation, some validation as well. And then also, because we're connected real in real time to the electronic health record, we can also somewhat a customize requests. So we can add diagnosis codes that maybe we hadn't considered before. As long as it exists reliably in the electronic health record, we can add it.
There's a couple great strengths of the database, because there are a lot of deliveries, about 10,000 deliveries a year over many, many, many years. We can curate rare conditions, congenital anomalies, things like that. So we can accrue, um, not only common complications with more detail and precision, but also then larger numbers of more rare complications, that may not be able to answer all of the scientists questions, but may actually be a source that can then lead to further interrogation. A manual chart review, for example, to get much more diagnostic and clinical management information that we may not capture at that level of detail, but we can help identify the source cohort. Or for other studies, pediatric studies or women's health studies, we could then follow individuals moving forward. So we don't do all of that, but MOMI can often be kind of the first step to those kinds of studies.
Dr. Williams: I was just thinking that, you know, the acronym MOMI makes me think that it must be all mommy research, if you will, as a, as I'm a personally a clinician, so I'm not as familiar with the research world. But it also includes, like you said, infants in NICU too. So this database is so large that I assume, many clinicians over the years, since it's been created in 1995, have come up with some great research projects from this.
Dr. Catov: That's right. And so, for example, uh, one of our investigators at Magee in partnership with pediatric cardiologists have been interested in studying placental origins of congenital anomalies, congenital heart defects, right? So we've got those, you know, we have those deliveries curated. So again, that might, that can't be the end of the story, but that can be a very powerful beginning story. And in this particular case, probably one of the other real strong capacities of our database is linking the pregnancy story with the newborn health and prognosis as well, right? So that turns out to be a really nice opportunity. So I often think that it's such a great partnership opportunity with pediatricians to come together and not only identify children with complications that someone might be studying and wants to understand, but also sort of marrying what happened during pregnancy that might be related to NICU length of stay or something like that. So we've got a couple of really premier projects that link the sort of high risk obstetrics to the pediatric side. And I think that's a really, that's a really powerful combination. It also is actually how families experience both pregnancy and childhood, right? It's really a combined story. So having data that can also combine those turns out to offer a lot of opportunity.
Dr. Williams: This feels really unique for an academic institution too, to have such, like a large database that's been going on for, oh my gosh, math is hard for me. Right? But like 25, 28 years now at this point in time. Are other institutions that you know about doing things like this as well? Are there other, I guess, academic institutions that have databases like this?
Dr. Catov: Great question. Since the advent of the electronic health record, there are more opportunities at other places for this kind of registry. What makes us unique is a couple of things. One is the longitudinal nature, right? So not everyone has had data that goes back to 1995. In fact, we're often asked, “Why would you keep anything after the advent of the electronic health record?” And as an epidemiologist, understanding trends, it turns out to be really, really important.
So we keep all of these, the data for that reason. The other piece is that very uniquely beginning in late 2017, we also built a bio-repository. So in addition to just a de-identified registry of all births, we actually have a subset of moms who consent to give an extra tube of blood or some placental specimens that can then be linked to their clinical data to set the stage for pediatric studies, maternal health studies. Really been committed to building an infrastructure that will enable not only, you know, folks at Children's and Magee, but across the University of Pittsburgh, across Pennsylvania, and ultimately across the country as well, making it possible for people to study pregnancy and newborn health. So that's really one of our mission driven components.
Dr. Williams: So how is this huge database then supported, if you will? You seem like you have a lot of staff, which is wonderful and a lot of excellent clinicians and thinkers and scientists behind this. Is there funding behind this, and how do you get the support for all of this?
Dr. Catov: Another great question. As I said, it really, it was launched by the passion and good ideas of a couple of people. But it takes more than that to keep it going. So there's been a commitment at the Magee Women's Research Institute to keep it going and to come up with strategies that it can also be sustaining. We also were fortunate enough to have a really large philanthropic grant that helped us stabilize and expand the infrastructure. So that's been huge.
But we're also looking to build an approach that is sustainable. So we've got dreams and ideas for the future, but also wanna be sure that we can keep our database and biobank alive and functioning to sort of fulfill the dream of the kinds of research that could be done with the goal of improving the health of women and children.
Dr. Williams: Can you describe a couple of the studies that have come from this? Because I feel like there's probably many of them at this point in time, but I'd love to know what kind of information we've gotten from this data bank too.
Dr. Catov: Yeah, great question. One of our current projects that I think is a great example of MOMI is really a large collaboration between Magee Women's Research Institute and Children's Hospital and pediatric physicians really funded by a philanthropic foundation in Pittsburgh, really trying to understand causes and predictors of infant mortality. So we're really, we used 10 years of MOMI data to build predictive models of who's at higher risk for sort of the most devastating complications of pregnancy. So that was phase one. So the MOMI data really drove a very innovative algorithm to predict risk. We also linked to state vital statistic data so we could get even more data from pregnancy and from infant health at birth and through the first year of life. And really, there was a bioinformatics team who built some predictive algorithms.
And then phase two of that is then how do we turn that into real time data capture so that we can begin to bring that information into clinical care and identify higher risk families, offer more support, both targeted medical support, but innovatively some community partnered support. That project is still ongoing and it's a great example of reaching across our community, across our hospitals. But without the data, I'm not sure we would've had the innovative driver to get us to even make the project possible. So I think that might be a nice example.
Dr. Williams: It's amazing that an idea that's a little seed can blossom into this giant oak tree that just keeps, you know, giving and giving with all of the research that you have, all of the collection, and then like future projects and, and implementing it into clinical care as well. It's very impressive. And it's leaving me at a loss for words, to be quite honest. It's great.
Dr. Catov: Well, you know there's always great potential of data, but data is only useful if it's actually channeled into knowledge that can then be deployed to ultimately improve care, because at the end of the day, that's what we're after. Not just collecting data for data's sake, but understand patterns and causes and consequences so that we can then combine our efforts to, you know, bring those findings to improve clinical care, to improve the health of families. So it's a bit aspirational. But I think at the, that's really the driving sort of mission behind both the data and our partnerships with investigators to use it.
Dr. Williams: So how do other smart folks and researchers get access to this MOMI data bank?
Dr. Catov: Yeah, another great question. It’s on our website, so it's on our Magee Women's Research Institute website, with some summary information, some examples of how the data and our biobank have been used, as well as how to access really starts with a request.
We work closely with investigators, especially in the beginning, what we have now fondly called this kind of inquiry stage where it's like, well, I'm interested in this question. How many cases of this particular condition are in MOMI? So that even tells us, is this even worth pursuing? So we can quickly query and provide, even without any research approvals, summary information so that people can say, “Oh, this is gonna be worth it.” Then we can actually, you know, go through a request process. All of our requests for data and for biospecimens are vetted and approved by a committee, because we're a research entity, so we really wanna be sure that they're, you know, what we're providing is being used to answer questions with all the appropriate protections.
The other piece I should add is, is although we're really a clinical database that allows us real time connection to the electronic health record, but every research project needs institutional research board approval. You know, some people can get lots of information, some people can get only de-identified information. All of that is vetted by the University of Pittsburgh IRB. So each one of our studies, it, it has IRB approval either by our IRB or if it's an external investigator, their institutional IRB.
And so then we work closely with the investigator to meet their request. There's a small cost recovery fee schedule to be sure that we can kind of keep the program afloat. But we see ourselves as a service not only to investigators on the Magee side, but also on the pediatric side and across the university. So you can find us on the website. Our goal is to partner with investigators to be sure that we can provide data and specimens if that's what they're interested in to meet their research needs.
Dr. Williams: And for those listeners who might have missed your first nod to the website, can you repeat that website name for us one more time so they can hear it?
Dr. Catov: Sure. It's MageeWomens.org. Go there and you'll find the link to our MOMI database.
Dr. Williams: Perfect. And I think you could also probably Google the Research Institute if you weren't able to find it with that link.
Dr. Catov: Correct. And there's a link to ask us questions. There's information, there's some examples of, you know, the data that are available.
Dr. Williams: That's perfect. Well, thank you so much Dr. Catov for coming to talk with us and to share all of this wonderful information and all of the great work you do. We look forward to the continued expansion of this MOMI data bank and all of the research that comes from it.
Dr. Catov: Thanks so much. Really enjoyed a chance to tell you about what we're up to.
Dr. Williams: And thanks for listening to, that's Pediatrics.
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Janet Catov, PhD, MS