Biobanking is the process by which bodily fluid or tissue samples are collected for research to improve our understanding of health and disease. In this episode, we explore the past, present, and future of biobanking at Nemours Children’s Health.
Carol Vassar, producer
Diana Corao-Uribe, MD, Director, Biobank and Molecular Analysis Program (BMAP) at Nemours Children’s Hospital, Delaware
Deepti Anand, PhD, MS, Research Scientist, Biobank and Molecular Analysis Program (BMAP) at Nemours Children’s Hospital, Delaware
Jennifer Holbrook, BS, Program Manager, Biobank and Molecular Analysis Program (BMAP) at Nemours Children’s Hospital, Delaware
Carol Vassar, podcast host/producer (00:00):
Welcome to Well Beyond Medicine: The Nemours Children’s Health Podcast. Each week we’ll explore anything and everything related to the 80% of child health impacts that occur outside the doctor’s office. I’m your host, Carol Vassar, and now that you are here, let’s go.
MUSIC: Well Beyond Medicine
Diana Corao-Uribe, MD, Nemours Children’s Health (00:27):
BMAP provides biobanking support and molecular analysis support. And remember, today’s samples will support tomorrow’s translational research and will allow for the development of individualized treatments that support precision personalized medicine.
Carol Vassar, podcast host/producer (00:46):
I’m joined today by Dr. Diana Corao-Uribe, Dr. Deepti Anand, and researcher Jennifer Holbrook to explore biobanking. That’s the process by which bodily fluid or tissue samples are collected for research to improve our understanding of health and disease. You’ll hear it referred to in this episode by the Nemours name, BMAP, or the Biobank and Molecular Analysis Program, as Dr. Corao-Uribe noted at the top. Here’s more about biobanking, what it is, and its significant potential to go well beyond medicine.
Diana Corao-Uribe, MD, Nemours Children’s Health (01:27):
Biobanking, simply said, is actually the process of collecting patient samples. We can process those samples, and it will end on specific study protocol and we store those patient samples, and we annotate them. I always say that a sample is as good as the information that it is associated with, so we annotate those samples with information that will be relevant for the research community.
The importance of biobanking is that once you have the samples, they can be used by the wider research community to really better understanding disease process and to hopefully develop new diagnostics and new treatments. The fact that we provide this, especially in pediatrics, is even more important because many of the samples because they are pediatric samples, are really precious samples. So as an example, thankfully, malignant tumors are not that common in the pediatric population when we compare it to the adult population.
So these samples become very rare and very precious because we don’t have that many, and the fact that we have this at Nemours can really help our researchers.
Carol Vassar, podcast host/producer (02:44):
I know that the program has been around and has had some history and some mergers. So give us some background and history on Nemours BMAP. What are its origins? What is its purpose? I’m guessing we’re going to Diana.
Diana Corao-Uribe, MD, Nemours Children’s Health (02:58):
Yes. So BMAP, Biobank and Molecular Analysis Program is an enterprise-wide state-of-the-art facility that houses both the tissue biorepository and a wet lab specializing in instrumentation methods and procedures for sample processing and for conducting molecular biology research experiments. So it really is kind of a one stop shop and it was formed by the merger of both the Biobank and the Biomolecular Core Lab.
So we really do have combined over 21 years of experience. We are located, and this is very important enterprise-wise. So we have our main facility in the Delaware Valley, and we also have a footprint in Orlando and Jacksonville. We are fully staffed. We have biobank coordinators in, again, Orlando and Jacksonville, and the Delaware Valley, and we have a whole lab fully staffed in the Delaware Valley.
Carol Vassar, podcast host/producer(03:57):
What services do you provide, and also, who avails themselves of these services?
Diana Corao-Uribe, MD, Nemours Children’s Health (04:02):
So we in the Biobank, we collect the samples. Tosses them if needed, install them for use at later time. That is the main concept. Each samples are to be used for research purposes. Investigator-led project IRB approval must be sought.
Carol Vassar, podcast host/producer (04:18):
An IRB or an institutional review board is an internal group of experts whose job it is to ensure that appropriate steps are taken to protect the rights and welfare of humans participating as subjects in research, including those whose biologic materials are provided as samples to BMAP.
Diana Corao-Uribe, MD, Nemours Children’s Health (04:37):
You need IRB approval to basically withdraw the sample from the biobank. Or if you’re starting a new collection and you have a specific project in mind, you will be needing IRB approval. But to just put samples within the biobank, you do not need to have IRB approval. So that I think is very important for our researchers to know. Because of this, really BMAP becomes an excellent support to Nemour’s research program because the samples are readily available as for request, and the sample collection can be done asked for the requirements of future projects.
So we both work with the investigator that knows exactly what he wants to do, but we also have these samples in our biobank for future researchers that may not know exactly what they want to do right now but that may come up with projects in the future.
Carol Vassar, podcast host/producer (05:28):
Dr. Deepti Anand elaborates…
Deepti Anand, PhD, Nemours Children’s Health (05:31):
So I want to add and elaborate on what Diana said for Biobank, and I will tell about what BMAP offers. So we also offer wet lab support to Nemours researchers and clinician scientists. We have labs specializing in the biospecimen sample processing, such as isolating serum plasma and mononuclear cells from patient blood samples, followed by their storage. We also free samples as a liquid nitrogen flash freezing technique. We also offer in our facility cell and tissue culture of surgery specimens. For example, we work closely with orthopedic department for processing of surgery samples such as bone, cartilage, skin, and other important tissues.
For tissue culturing, we process these culture cells from them for biobanking and for future research. Adding together to the biospecimen processing of patient samples, we offer advanced molecular biology services for research projects. For example, we have a gene expression analysis and genetic copy number variation detection in our facility. We are housing technologies that are cost-prohibitive for individual labs at Nemours to operate.
And by housing the instrumentation in the core facility, we can maintain the equipment as required by increasing the utilization of the equipment across the Nemours enterprise. We also help develop new assays and SOPs which are stand and operating protocols. As for the research project requirement, we have team of trained lab staff and PhD level scientists, including myself.
So I work closely with the clinicians and research labs to understand their research requirements and challenges and try to develop solutions for a smooth functioning of their research from the beginning until the publication of the work.
Carol Vassar, podcast host/producer (07:47):
In terms of who avails themselves of all of your services, it sounds like it’s researchers. Is it just Nemours researchers, or are there researchers from outside of Nemours who also avail themselves of your services?
Diana Corao-Uribe, MD, Nemours Children’s Health (08:01):
So we certainly created this originally for Nemours researchers, but many of them have collaborations with other entities, other hospitals. So we definitely allow for that, and we have SOPs in place for the shipment of specimens outside of Nemours to other institutions. We have definitely done that.
Carol Vassar, podcast host/producer (08:23):
So once samples are in the biorepository, what kind of processing do you offer? Do you offer those kinds of services?
Jennifer Holbrook, Nemours Children’s Health (08:32):
Yes, absolutely. So in our core facility, we are housed multiple instrumentations. This allows for immediate specimen processing. We can do nucleic acid extraction. We have various quality control metrics that we can run on patients’ specimens. We can do what’s called specimen identifying and profiling. We have instrumentation to run gene expression analysis using real-time qPCR. We can do detection for copy number variation in digital PCR, and we also offer DNA sequencing for clinical diagnosis.
As mentioned, we do have a shared instrument facility as well. We can provide instrument training to Nemours staff and researchers to access these high throughput and high-performance instruments. In BMAP, we can give researchers and clinicians the right kind of tools that they need to do their research. We can provide them with a large cohort of patient samples. They can use to study disease populations, and we can provide them with wet lab services to help them conduct their experiments for their research projects.
Carol Vassar, podcast host/producer (09:35):
How is the privacy of somebody who’s maybe donated these samples or from whom they’ve been collected? How does Nemours go about preserving human rights, legal rights of any person who offers biomedical material for research?
Diana Corao-Uribe, MD, Nemours Children’s Health (09:51):
That is an excellent question, and I’m so happy that you asked that. So first and foremost, we de-identify the samples, and we provide de-identified information to these researchers. The other very important part of this is that all patients must consent to having their samples deposited within the biobank. We do parental consent because we’re dealing with a pediatric population, but we also do consent for children 12 and older if the parents and the clinicians think that it is appropriate for the patient to give their own consent.
Then we maintain a biospecimen inventory using a data management system that is called BSI, and that helps us track samples through collection, processing, storage, and distribution. Using BSI, the researchers can also surge this de-identified biobank data for conducting the research is very important that we protect patient health information, which is PHI and that is one of the very few risks of biobanking is not being able to protect PHI. And here at Nemours, we take it very seriously, and the IRB are always looking for any indication that we’re not doing that. And so far, we have been doing it.
Carol Vassar, podcast host/producer (11:17):
Talk a little bit about the process of de-identification by name. It should be obvious what that is. You’re taking an identified sample, and you’re removing the person’s PHI, their name from it. Talk about how that happens and how you can trace that sample all the way through.
Diana Corao-Uribe, MD, Nemours Children’s Health (11:34):
So we get that sample. It is barcoded. We add it to a database, and we give it a number. And so now John Smith is sample 2522. And after that, every piece of information that we give back to the researcher is going to be sample 2522. If by any chance the researcher needs to have more information associated with the sample, we are the only ones that can put the sample and the information together. Once we get that, we give it back to the researcher without even him or her any specific patient identification.
Again, this is all within a data management system that will allow us to follow these samples so we know exactly where they are in which freezers, in which liquid nitrogen tank the samples are. We know how much we have, how much we’ve given away, and all of that information is protected. It is password protected, and it is also in one place so that not everyone can come in. It’s all in one place within the hospital.
Carol Vassar, podcast host/producer (12:43):
Tell us about some of the research that you might know of that is being conducted or is already published that might have involved materials and services from BMAP.
Deepti Anand, PhD, Nemours Children’s Health (12:54):
So we have multiple ongoing projects and ongoing services with different departments in the Nemours and we have plans for future collaborations with other departments as well. We are working closely with several research investigators and have active research studies with them.
For example, with hematology-oncology department, we study for acute myeloid leukemia and sickle cell disease. Several studies that are ongoing are with orthopedics department for a spinal muscular trophy, neuro-orthopedics, and dysplasia. We have contributed to other departmental studies as well in Nemours with neurology, cardiology, and rheumatologic department as well.
As I mentioned earlier, we are also working towards growing the BMAP services across other departments. And these collaborations have led multiple publications and investigator grant support that we are really proud of. The collaborations and the number of publications that we have so far has really been game-changing in terms of the disease understanding their diagnostics, and for future research treatment opportunities as well.
Carol Vassar, podcast host/producer (14:13):
Let me ask you this, why is this effort important to Nemours and the children we serve, as well as the children who are beyond our walls?
Jennifer Holbrook, Nemours Children’s Health (14:21):
I can tell you a good story about a patient that we just helped at Nemours. So this patient was here, the family reached out to a collaborator who specifically researches this child’s disease, and there’s only a few investigators in the entire world who will do research on this particular disease. And the family reached out to us and asked us if we could help facilitate this specimen from Nemours to this investigator, and we were able to accomplish this for this family.
So for this particular family, that has been game-changing because now their child’s specimen is now in the hands of a researcher who’s strictly focused on researching their child’s disease and hopefully, they can have a positive outcome from that.
Carol Vassar, podcast host/producer (15:10):
I’m sure that’s the world to that particular family.
Jennifer Holbrook, Nemours Children’s Health (15:13):
Diana Corao-Uribe, MD, Nemours Children’s Health (15:14):
And Carol, normally, you can say, “Well, that can probably happen without the biobank existing,” but there are a lot of walls for that to happen. And the fact that we already have this process in place consenting the family, having all of these collaborations in place, it makes it so much easier. I’ve been a pathologist at Nemours for a long time, and we’ve had these requests in the past and it was so much more complicated because, as you can imagine, there are obviously many legal issues associated with samples being in one hospital, especially when they’re going to go outside of the country. So the fact that we have all of this already in place makes it so much easier.
Deepti Anand, PhD, Nemours Children’s Health (15:54):
I want to add a little bit more to this how BMAP fits into the Nemours vision of well beyond medicine. I mentioned earlier also that we are working for researcher-led projects in Nemours and we are helping towards identifying to research the disease variants and to understand the etiology of the disease and the best possible treatment and prevention models.
Carol Vassar, podcast host/producer (16:21):
What makes BMAP a useful program? Why is this important to Nemours and to the children we serve? And also I hear we have an affiliation or an association or partnership with the American Lung Association.
Diana Corao-Uribe, MD, Nemours Children’s Health (16:35):
Yes. First of all, the biobank, we now have over 11,000 specimens, including solid and liquid malignant tumors, tissues, cells from discarded surgery samples, and other pathologic specimens such as blood stool, saliva, et cetera. Basically, we can collect anybody with fluid or tissue. We also process many samples from ongoing Nemours clinical trials project. So that has also been a very strong association, and we serve a very important role with the clinical trials. And lately, and we’re very proud of this, our biorepository for the US National Storage Site for the American Lung Association, airways Clinical Research Center. So that is ACRC.
The biorepository will house somewhere between half a million specimens for approximately 4,000 research subjects and will be really critical for future research studies on respiratory health.
Carol Vassar, podcast host/producer (17:40):
What is your vision for BMAP moving forward in the short term, one to two years or so, and in the long term, five years or more?
Jennifer Holbrook, Nemours Children’s Health (17:48):
So for the short term, as we’ve already talked about, we have footprints in Florida in both Jacksonville and Orlando, and our goal is to expand that. We want to begin and also expand the collection of specimens in Florida and develop maybe a potential sister repository to make access for Florida clinicians and researchers make access to their specimens convenient and easy but still safe storage.
Carol Vassar, podcast host/producer (18:16):
And what’s the timeline on that? I’m curious.
Jennifer Holbrook, Nemours Children’s Health (18:19):
Well, hopefully, within the next year, we already have some of that process ongoing now, and it’s just developing, having conversations about space, developing the necessary protocols, and basically storage space to be able to facilitate that.
Carol Vassar, podcast host/producer (18:36):
And going beyond that past the first year or two, where do you see yourselves?
Diana Corao-Uribe, MD, Nemours Children’s Health (18:41):
So the way that we see BMAP and we are doing that, but we want to do it more. We really need to have much more visibility within the enterprise. Really what BMAP is all about is to benefit Nemours clinician-scientists and research scientists, but also providing biobanking support and molecular analysis support to all of the researchers.
We’re also going to start working very closely with the directors of the residency program and the fellowship program because we have started noticing that many fellows want to use the Biobank. They have to complete research projects during their tenure here at Nemours, and we can facilitate that for them. So again, that is another area that will be very useful when we’re trying to attract the best candidates for residency and for fellowship when we can tell them you need to do a research project, but we’re not going to just tell you need to do this and you have to figure it out, we’ll actually provide support for specimen collection processing and also experimental design.
We really are working right now. We joke all the time that we’re on a little bit of a campaign trail, and this podcast is obviously, part of that is to really have more visibility within the enterprise so that we can have more people use our services. Another important factor that we’re working with is with the IRB, that are now going to highly encourage researchers that want to start any type of collection to use the biobank.
And if they don’t want to do that, then they’re going to have to give a good enough reason for not using the Biobank, and that is because the institution is putting a lot of effort and also money into this and we want everyone to use it, and we want this specimens to be protected as we know we can do.
Jennifer Holbrook, Nemours Children’s Health (20:40):
We hope the BMAP will be seen as the first stop shop. Basically, as Diana mentioned, anybody in the research community or clinicians will come to us. We can teach them how to create a bio-repository. We can tell them the services we have. We can direct them to the other cores that are located here at Nemours and just help facilitate all their projects going forward.
Carol Vassar, podcast host/producer (21:02):
What a great resource. How does one start doing research projects with BMAP?
Diana Corao-Uribe, MD, Nemours Children’s Health (21:08):
That is very easy. All they have to do is communicate with us via email. They set up a meeting with many of us that are in this group. We have created a pretty extensive research study packet with all of the information necessary, including pricing, and then we have a meeting, and we sit with them, and we go over what they want to do. It’s very personalized, and I will tell you that I have been doing this for a long time, and no one that has used biobank has not used it again or have said, “I don’t want to use this for any reason.” They’re very happy. We make it much, much easier for the researcher when they have to apply for the IRB either exemption or not exemption, and just in general make it so much easier for them.
Carol Vassar, podcast host/producer (21:59):
Thanks for listening to this episode on biobanking at Nemours with me, Carol Vassar, and our guests, Dr. Diana Corao-Uribe, Dr. Deepti Anand, and Jennifer Holbrook. What are your thoughts? How is biobanking changing medicine? Visit nemourswellbeyond.org to submit a comment or leave us a voicemail. While you’re there, check out our other episodes and subscribe to the podcast.
Many thanks to Che Parker, Cheryl Munn, Rachel Salis-Silverman, Benjamin Duong, and Savannah Petitt for their production assistance with this episode. Join us next week when Nemours psychologist Dr. Roger Harrison joins us. He’ll talk about what going well beyond medicine means to him in his practice, and we’ll learn about how he puts his passion for health, equity, and inclusion into action. Until then, remember, together, we can change children’s health for good, well beyond medicine.
MUSIC: Well Beyond Medicine