Wizards of Biobanking: ORIGINS Biobank (Telethon Kids)

Read the full transcript below to learn more about how the ORIGINS biobank operates, what type of specimens and data they collect, biobank accreditation, staff training, etc. Please write to us at [email protected] if you have any questions or suggestions.

Full Episode Transcript:

Srikanth: 

This is the first episode of our podcast series “Wizards of Biobanking”. And our first wizards are from the ORIGINS biobank, Telethon Kids, Perth, Nina, and Courtney. Nina and Courtney, please explain your role in brief. 

Nina: 

I manage the ORIGINS biobank at Telephone Kids. ORIGINS is a large Birth Cohort. It’s a large Birth Cohort research platform run in Perth. We are aiming to recruit 10,000 expecting mothers. We follow the pregnant ladies and their partners (optional) and then their babies from birth to the age of five. We collect biospecimens from those ladies, so we’re ending up with quite a large collection of samples. 

My background is in immunology and childhood research. I’ve done a bit of work in clinical trials and a lot of work around pregnant ladies and kids and what disorders or health problems might develop in kids. We’re trying to work out why that is happening by looking at their biospecimens. 

Courtney: 

I have been working with the ORIGINS biobank for about four years now. I previously had a bit of experience in genetics. I started working out with asthma research, pivoted over to a bit of pharmacogenetics, and breast cancer, and then I started with ORIGINS in a biobanking role after completing a Master’s in biotechnology.  

(2:37)

Srikanth: 

How old is the ORIGINS project? When do you start this?  

Nina: 

The project started back in 2014-15. It took a long time to get the project up and running; especially from an ethics perspective. We started recruiting ladies and collecting samples in 2017. So, we’ve been running for about five years. 

Srikanth: 

How the ORIGINS project came on board? Why did they feel like such a project was needed? 

Nina: 

I guess the ORIGINS project is a spin-off from the Childhood Allergy and Immunology Group, run at the University of Western Australia. I worked for that group previously and did my Ph.D. there. As a part of that group, we were looking at – what affects an infant’s immune system during pregnancy and in the early years after pregnancy. Specifically, this group looked at allergy development. We did a lot of small intervention studies of cohorts around the size of a few hundred (200-400). 

There was a need for large-scale studies and for a platform for smaller research groups to utilize for their research. It’s quite hard for smaller research groups to engage with hospitals and allow access to participants and samples. 

At that time, Susan Prescott and Desiree Silva from those smaller studies had an idea to expand it to a large-scale study that looks at the same areas of pregnancy. I think it was an expansion of the work that we did previously.  

(5:13)

Srikanth: 

How do you measure the success of the project? 

Nina: 

We are just about to finish recruitment. We are aiming for 10000 participants in total; only 4000 of those will have extensive follow-up and biological sampling. The other part is more of a passive data collection. For us, success is finishing the recruitment of 4000 intense participants. I think we’re missing 70 participants maybe, so we’re very close. That’s a really big achievement for us. 

The measure of success is – the recruitment of intended participants, follow-up of those participants, collection of data and samples, the number of researchers that interact with the platform, and the utilization of the data and samples.

(6:46)

Srikanth: 

How do you recruit participants? 

Nina: 

We’re very heavily involved at Joondalup Health Campus where we are allowed to approach pregnant ladies when they interact with the hospital. When they attend antenatal clinics, we ask for their interest in the project. If they express an interest, then we invite them to an initial recruitment visit and explain in detail what it entails. 

Also, we are allowed through the hospital systems to send out some flyers to let them know that we exist, and they can express interest through that system as well.

Srikanth:

What is the success rate? How many people enroll? because these things also differ from geography to geography, how receptive people are to such ideas?

Nina: 

We are lucky that we have two consent levels. People can interact with us by being active participants, which means that we see them at clinic visits, and collect their samples; for people that are interested in research but don’t want to be actively involved, we call them for routine data. So, you can be involved without having anything to do with us; you’re just allowing us access to the data behind the scenes. And then, of course, some don’t want to be involved at all. Courtney, you might actually have a better split of those numbers.

Courtney: 

Well, there’s definitely having the two levels has really benefited all the different situations that these mothers are in. I mean recruiting at an antenatal time point, you’ve got first-time moms that are learning what sort of time commitment they’re coming into. 

Having the two levels has been really beneficial. The routine data is definitely a much easier appeal, but because it’s an antenatal time point the mums are just so invested in their kid’s future or the mum that is really wanting to see how the benefits of this kind of biobank might prove down the track. It’s kind of the two different people that I think we’re targeting with those recruitment levels. There are some people where it’s it is just two hard baskets sometimes, and somewhere they just dive right in and take on every single possible subproject, every single sample. 

Nina: 

I haven’t got the exact numbers in terms of how many we approach and how many completely say no, but we’ve got an even split between the ones that agree to be highly involved and the ones that agree to be involved on a lower level. So, that’s pretty much one-to-one. But the number of how many say no I’d say out of the women we approach I’d say about half were interested and half were not. 

Srikanth: 

Not that I’m experienced in this, but when you’re heavily pregnant probably, you got other bigger problems to worry about.

Nina: 

Yes! And I guess that’s where we have incentives. We promise them to follow up with their children. So if their babies display any health problems, i.e. mental, developmental, or physical, the project offers follow-up with pediatricians and some sort of surveillance. I guess that’s where we are on the balance of them helping us with samples and questions, and we offer the follow-up of their children and assistance if anything untoward happens.

Srikanth: 

Yeah, that’s a good win-win situation probably for them too. 

(11:57)

Srikanth:

You talked about two levels of consent. Are these broad-level consent? Or are there specific tiers of questions, based on which decision is made who, and where the data and biospecimens will be utilized?

Nina: 

It is quite a broad consent, and that is why it took a while to get us through the ethics process to get the project approved. If the participants choose to be active participants, they agree to utilize their data and samples but only for ethically approved projects (Including research within telephone kids, WA, Australia, and also International research). 

But the participants do have the level of consent where we ask them from the beginning whether they allow us to use their samples for DNA. So in that initial consent, they can certainly choose to say that they don’t want to participate in any DNA-related research, or they do. But other than that, they broadly agree to projects that they may not know. However, we assure them that these projects go through very strict ethical regulations. The projects are necessarily related to the child’s development. 

Srikanth:

Is there a process to withdraw the consent?

Nina: 

Yes! there is. Participants can withdraw their consent at any time. The active participants have the choice if they don’t want to be part anymore. They have two choices – they can either drop to the more passive participation or they can drop out completely. As a part of that process, they can also choose to let us keep their samples and data or can choose to destroy both.

The majority of our participants choose to drop just to the passive level; very few have chosen to completely drop out. A very few participants, I think about ~ 30, have dropped to another level and have asked us to completely destroy their samples and be forgotten. Many people are just tired and finding it hard to find the time to interact with us, but are still happy for us to do the research utilizing their information. 

(15:40)

Srikanth:

Moving on to the utilization part, have you guys started giving out samples to researchers? 

Nina: 

Yes! we have absolutely. The platform is built for researchers to come in as subprojects, and we have about 42 of those at the moment. They don’t all use the biobank; there are some, that just use data. But we have about 25 projects at the moment that interact with the biobank. 

So, there are a couple of options – some of the projects run real-time projects; they may run an intervention with some of our mothers, collect samples as part of that and then withdraw samples as well. They can interact in real-time, or they can come in after some period e.g. you got a thousand ladies with whole blood samples, and they sort of withdraw samples in retrospect. We have given out about…I don’t have a number. Courtney is really good with numbers.  

Courtney: 

I think we’re sitting at about just over 4500 that we’ve distributed and that’s been spread across a large bulk of them with some longitudinal stool samples, microbiome, split across lots of urine and serum samples, some plasma samples, and also some of our PBMCs and CBMCs from the blood. 

Nina: 

So, certainly, in terms of utilization Sri, I mean we have at the moment about 300000 individual samples in our freezers. So, if we’ve distributed around 4000 samples, as a percentage, that’s not huge at the moment. But yeah, we’re certainly happy that there is a utilization, but we also hope that in the coming years that will expand. We’re also hoping to do some bigger sort of cross-cohort studies but also waiting for some of our time points to close so that we have the full population because everything is still moving. But yes, so certainly some samples have left, but we’re definitely hoping in the coming years that will accelerate and there will be higher utilization of our samples.

(18:22)

Srikanth:

How do you publicize your biobank? How does the research community come to know about the existence of your biobank?  

Nina: 

That’s a really good question. So, we’ve not done a lot of active marketing of the biobank, yet it’s been decided that while the cohort is growing and a lot especially the kids are now growing out, our oldest kids are reaching five years of age. But the collections are still a relatively small number of children who have passed those time points. So, we have kind of been holding off a bit because the collections haven’t been completed. We’ve decided to hold off a bit, but I think as of next year, given we are finalizing the mothers, then we’ll finalize the births a mid-next year, so in that sense our collections are complete. 

There is certainly, you know, marketing being discussed about how we will promote those collections more very soon, but we haven’t done a lot of active marketing. We have presented at conferences, and we have there are certainly ways to interact with us, but it’s been more passive for us so far as in we’re getting approached by researchers. We haven’t done a lot of marketing as such. But it’s certainly on the card, so we have plans to publish specimen catalogs. We also have a commerce person who is, you know, very keen to start that process of publishing or making our collections more widely known, but we haven’t quite reached that point yet.

(20:31)

Srikanth:

You mentioned some researchers only using the data. That means you collect good enough data for researchers to use. So, how do you plan that? what data points to collect? Probably it’s different at the mother level and the child level etc. so is that all decided before the project starts? has it kind of changed during the period? 

Nina: 

That’s a really good question. So, when ORIGINS set out we interacted with researchers in a lot of research fields. We kind of asked every field what do they see as the essential information to collect? So, say for the environmental researchers, the allergy researchers like what do we must collect so that you can do your research. I think that was a good process. We got a lot of expert input. But it also generated an incredibly large amount of questions for the mothers relating to themselves and their children and I mean if you answered all those questions we would have an incredibly rich data source. But we have also found that there’s been a bit of pushback from the participants because it was too time-consuming. 

So, we have had a couple of times to reduce the questions that we ask because it after all is a balance of what we would like and what the participants are happy and willing to do. So, there’s no point in us asking incredible questions if they’re not answering. So, we have scaled back quite a bit. What we initially thought was reasonable has changed too, you know, and has been scaled back in a few rounds. For example, during pregnancy we had three follow-up visits, so we saw the mothers at 20 weeks, 28 weeks, and 36, and we had to drop that 28-week time Point. And similarly, in infancy, we had a two, four, and six follow-up time point and decided to drop the four months time point, just because it was too much of a burden for the mothers, and we were running a very real risk of people pulling out because they felt overwhelmed. 

Srikanth:

Do you also do online surveys?  

Nina: 

Yes, we do. Through REDCap we send out online questionnaires. We have a couple of different questionnaires. We have our sort of ORIGINS questionnaire which talks about family history and a number of different health domains, and then we have some validating questionnaires such as dietary questionnaires, stress questionnaire, and dust questionnaire, so we have a couple of sorts of validated tools that are also sent out to the participants and I don’t know Courtney you might want to add something. 

Courtney: 

There are also some of the early questionnaires for the children around three years and five years and Australian eating survey for the dietary information on all the participants. 

Nina: 

Yeah, so behead, so as the children go there is a developmental questionnaire, but yeah, so it’s a mixture of questionnaires that we have made up and of sort of validated questionnaires as well that are easier for the researchers to work with. 

Srikanth: 

The project stops following up with the kids when they’re five years old, is it?

Nina: 

On the current funding, yes! The initial funding we received covers the follow-up until the children are five. We’re working very hard to get some funding and keep following them up because there are obviously a lot of things in terms of health issues that would be developing around that age. We would love to see them for a bit longer as conditions like asthma certainly change and a lot of things happen in that next period. Then there’s a lot of testing we can do like respiratory testing that the kids are only old enough for at around the ages of sort of six or seven, they start to become more proficient in those sorts of tests.

(25:25)

Srikanth: 

Let’s take a break and let me ask a few questions about yourself. What is the best thing that you like about Perth? 

Courtney: 

Beaches. We have an endless number of beaches. I think you would have seen it at the ABNA conference to the end.  

Nina: 

I’m originally from Europe Sri, and when I came to Australia just completely blown away by the scenery, and then you know the nature side of things, the beach was very much but also the wildlife and the bush. you know Perth is just such amazing. I still feel lucky every morning and I feel to some extent like I’m on holiday, so it’s just a really wonderful place and a really nice place to bring up kids as well. Nice lifestyle and lovely people and is just a really good place to live. 

Srikanth: 

Yeah, and also I think a lot of sports and outdoor activities that people do as part of their lifestyle.

Nina: 

Absolutely! Certainly, compared to Europe where we got restricted by bad weather and darkness during winter. We’ll certainly hear about the availability of daylight, and you know, comfortable conditions and yes, sports and parks and facilities, that sort of thing’s really really good. I mean the heat is a bit never thought of it that way, but the heat can be a bit restrictive during summer and I never really thought of it that way but certainly, when it’s you know when it’s over 40 degrees is the tipping point yeah the whole outdoor aspect kind of takes a bit of a turn. 

Srikanth: 

Is 40 the highest it gets there in Perth? 

Courtney: 

Occasionally, a little bit above. 

Nina: 

I think the highest I’ve seen is about 43. 

Courtney: 

Yeah, I just have memories of being in primary school when you got the day off school I think it’s 40 for two days in a row. 

Nina: 

So, anything over 40 becomes a little bit tricky to manage. 

(28:11)

Srikanth: 

Getting back to the ORIGINS project, do you do anything specific in terms of the security of the specimens? Do you store specimens in different freezers and do have power backup and alarm systems? 

Nina: 

Yes, definitely so we have our samples sort of immediately stored in the processing locations but then get transferred to a dedicated freezer farm where the minus 80 freezers are monitored 24 hours, and any temperature deviations we get alarms. We’ve got backup freezers switched on so that we can move samples quite quickly if there are any issues with any freezers. So, yes, definitely we have that. We have our live cells stored in liquid nitrogen tanks that are also in a monitored facility.

I know some facilities break up their collections so that they have good, you know duplicate collections just in case one facility runs into trouble, and you have the backup facility. We don’t have that. so all our collections are in one location. Basically, there’s just certainly in Perth and I don’t know about other locations, but certainly, here there’s a real shortage of freezer Farms as we call them or freezer facilities. We would love to have our collection split to protect them in that way, but, we haven’t got the opportunity unfortunately to do that. So yes, given it’s all in one facility, if that facility ran into trouble, we would run into trouble with it. But certainly, we’ve got all the mitigating factors for it in terms of the facility, the monitoring and all that, so probably unlikely, but say there was an earthquake or something like that affected our building, we would lose our collection. As far as sort of within region, we are very well looked after in terms of risk mitigation, but yes, if there was any sort of any drastic event we don’t have a duplicate collection.

Srikanth: 

Yeah right, the thing with risks is that you don’t know what you don’t know. For example, COVID. Who would have thought before COVID that we would have such a situation. 

Nina: 

Yes. But if there was a natural disaster, I guess even in that case if we had two collections across Perth it’s likely that both sides could be affected. Anyway, if there were any major disaster events we’d be vulnerable to that. 

Srikanth: 

More than major disasters, I think for the smaller things, like for example, power being off due to some kind of weather issues for a day. I think it happened, you know when I was talking to people in Adelaide they said sometime in the last four or five years it happened that there was like no power for a couple of days. You know those kinds of things are you know even a freezer going out of commission. 

Nina: 

For smaller problems, we have as many backups as we can. We have the alarms; we have the generator backup. We are quite secure in terms of the locations. It is quite unlikely to flood, as it’s well enough above sea level. But yes, so within the region, I think we’re sort of well risk mitigated. 

(32:47)

Srikanth:

How did COVID impact operations and or recruitment? 

Nina: 

I’ll get Courtney to talk a bit about the participants, but I will say something very unusual or something unexpected we saw with COVID was that the participants were actually more engaged. Of course, there were some restrictions in seeing people face to face, but in terms of engaging with the process and collecting samples at home, and answering questionnaires we saw an increase in engagement, which was really interesting. 

We think it stemmed from possibly well partly because people weren’t working, so there was probably more time on their hands, but also I think we were all a bit scared probably when COVID hit. There was a sort of willingness to help, and engage and do something. A lot of people expressed a need to feel like they were doing something to facilitate research and that was really interesting. But I’ll get Courtney because Courtney also works on the recruitment side of the project, so Courtney can probably talk a bit more about how the recruitment and how the participants were affected that way.

Courtney: 

I think we definitely did notice that I think the contact that we had with the mums particularly after they’ve had their babies when they’re at home preparing for sample collections, preparing for questionnaires, the phone calls I think we have with them sometimes that you’d normally be like a minute two minutes arranging for couriers, they kind of would sometimes go up to like five minutes to six minutes, talking about things that are sort of outside the main part of it. So, I think we really got to know some of the participants pretty well. 

And yeah, I think there was definitely really quite a strong interest in what was being done, what could be found out using these samples. So, I think there’s a lot more interest from participants at that point of how can I help, and I think that’s a really big point of getting people involved in these kinds of cohort studies biobanks and setting these things up is what are they doing it for. And I think participants really like knowing and hearing about what they’re contributing to.

Srikanth: 

Yeah, I also think that you know from your point of view, you know your work becomes a lot more meaningful when you have a personal rapport with the end user of your work. Like we see that a lot where you know when we meet our customers, and then we know them better. You know a lot of things change because you know what problem is being solved and therefore, how you interact or how you respond changes a lot compared to someone you have no idea of what is being done.  

In terms of the operations of the biobank, are now things back to how it was before or is there an everlasting impact on how things were being done?

Nina: 

Yeah! so, I think we, now we’re pretty much back to working the way we did before, except we did find that because we were embedded in the hospital, we had our clinics in the hospital. Of course, the restrictions lasted much longer in the hospital environment. So, we have actually had to change location from being in the hospital to building a sort of clinical facility outside the hospital. So, it became too difficult to operate, especially as the hospital decided even after the restrictions were lifted for adults, that the kids were often the vehicles for carrying COVID, so particularly the kids were restricted from access to the hospital. 

In terms of facilities, we’ve had to change. We’re back to normal in terms of seeing participants face to face now, and I think we’re pretty much back to normal in that respect, but I actually think we have become better during COVID because we expanded. We never interacted with our participants as well electronically before as we do now, so we’ve now got additional options. We learned to do engagement visits, and recruitment visits via teller links. So, everyone became very used to that form of communication. We are continuing some of that, we try to see them in person but if someone is inhibited and can’t get to us, we still run some visits electronically. We learned to use couriers a lot better to bring samples back to the participants. We have learned to use mobile phlebotomy. So, when the participants couldn’t come to us, we were lucky enough that there was a mobile phlebotomy provider in Perth, and we were able to send the phlebotomists to the participants’ homes. We’ve continued that as well on a lesser scale, but keeping up some of those new ways of working even after COVID has gone, I think has been a real positive.

Even just not the participants but in interacting with other researchers and other biobanks what we learned to do electronically that we never did before has been a real positive. So, we lost some extra face-to-face with our participants, and we lost some samples since we could not get close to them while we were working all this out. So, we certainly lost some samples along the way, but once we worked it out and mitigated some of that, we got better compliance during those lockdown periods and certainly now have improved our day-to-day operations.

Srikanth: 

Yeah! So now things are getting normal, you can get the best of both worlds.

(39:19)

Srikanth:

How do you keep yourself abreast with the latest things happening in biobanking, and you know the rest of the things around it also is there a training process for the staff? Do they annually go through training? 

Nina:

In terms of keeping up, I guess there are two things. When we’re running such a long cohort we have to stick to what we always did to keep the samples processed the same way. So, what we have learned to do is, while we stick to our original protocols and still process every sample the same that we always did, we’ve certainly made some additions to our protocols along the way.  We have learned that certain sample types are useful for certain methodologies. So, for example, we process placental samples. We started off doing sort of core biopsies and membrane biopsies and weight and images and have learned along the way that there are other ways some of those samples can be kept alive. Some of that is what we’ve learned from some of the projects that interact with us. There may be some sample types that we hadn’t thought of previously that we add to our protocols. As we go, we might be able to keep them alive, and certainly some histology procedures that we can look at. So, we’re certainly learning from the projects that interact with us, and they’re quite specialized in what they do. 

We are learning from literature as well and sort of just keeping up with what we hear in conferences and presentations and kind of thing that’s clever. We didn’t think of that from the beginning, but we will add that into our protocols or even split some samples into smaller volumes because technology becomes more advanced, We thought that 500 microliters was a small volume, and we might think well you know a lot of researchers can work with a lot less than that. So, we’ve sort of become a lot more micro as we’ve gone and learned that a sample can certainly be a much smaller volume than perhaps what we previously thought. So, we’re saving space that way and also aliquoting to smaller volumes so that they can be utilized by more different researchers. 

So, yes we’re keeping up as best we can and learning from it, and it’s freaky because it’s a big world out there. There are many areas and many things to think about, but we’re certainly sort of attracting that knowledge and adapting as best we can. And just a really exciting collection that we have just sort of become able to get we’ve started collecting amniotic fluids from some of our cesarean sections. That’s basically because one of our obstetricians has found a way to collect that sample really well and is willing to interact with us.  So, it’s also sometimes those connections with Specialists being willing to have ideas and being willing to help us with those collections. So, there’s not much point sitting in the biobank and going with like amniotic fluid, I think it’s someone there with the woman and someone who’s a medical person who’s able to and willing to and to do those collections for us. So, it is also about the people around us and what we have access to.

Srikanth:

You guys also collect a bag of dust from participants, right? 

Courtney:

Yes. We really love the volume that we have, and it shows the generosity of our participants in the body with the dust that we have been receiving right. 

Nina:

We have so much dust, and we have boxes upon, boxes upon, boxes of dust. We’ve run into real trouble as to where do we store it, what do we do with it? and Courtney and I’ve just started that process of getting it sifted and turned into something more manageable. But we’re literally drowning in the dust. I wouldn’t say it’s one of our favorite samples, but we have a lot of it.

(45:13)

Srikanth:

Is there any certification of the biobank that you have already done? or aiming to do so?

Nina:

We train all our staff when they start with us, and they get signed off by either Courtney

or myself. Then we do training along the way when protocols change. It’s generally a proficient staff member who develops the new protocol and then trains the other staff members. We don’t have an annual training as such. We sort of feel that when everyone is proficient in their workflows they generally stay that way unless they change, then we do upgrades. We do have sort of annual training in terms of good clinical practice and some other requirements just to keep up with the regulations we are within, so in terms of data protection and all of those sorts of things. 

In terms of being accredited, we are not yet. But we were watching that conversation very carefully and certainly at the ABNA conference this year. And I’ve been following it for a couple of years, am very interested to see where it goes, and I am very open to becoming accredited. So, we’d like to, and I think it’s coming in the future. I think there will be a requirement even if there’s not a requirement, I think there will be an advantage in being accredited right? Perhaps in attracting funding in who people choose to work with and knowing to which standard a biobank operates, I think it is going to become really important. And then I wouldn’t be surprised either if further down the track it becomes a requirement. 

So, we are following that conversation very carefully and certainly made a lot of notes in those workshops at the ABNA conference this year. But I think we’ll go down that path and I think we’ll have to but as far as at the moment, of course, we’re using the software, we use and a lot of things are you know, we’re working within the parameters of what’s acceptable, and sort of accredited. In that sense, we’re working within certain frameworks. But in terms of our staff and the biobank becoming accredited, I think we’ll move in that direction. 

Srikanth: 

Right many of our American customers are CAP (College of American Pathologists) certified, and I’m not sure whether it’s purely an American thing or whether it’s an international certification and whether there is an equivalent in Australia, but that’s something that a lot of our customers do in America. 

Nina: 

Yeah, so certainly we’re not under any regulations like that, most of our staff is you know, university trained, but certainly, we do have some staff that is pathology trained and there are you know, we have medical scientists amongst us. But certainly, if you look at Courtney and me from a science background, we don’t fall under any accreditation, so we’d need that to be sort of a biobanking accreditation. We’re not required to fall under anything either, but I’m saying that I think we should raise the bar and become accredited. 

(49:17)

Srikanth: 

Moving on to the last part of this session, it will be incomplete if I don’t ask you about OpenSpecimen. I guess you guys started around 2018-19. It’s been about four years since you are using OpenSpecimen. How many people have access to OpenSpecimen? Before OpenSpecimen, what were using? like Excel sheets Etc. 

Nina: 

So, I might just tell you a bit about the history, Sri, and then Courtney certainly has some more details. Before OpenSpecimen, we were operating between Excel spreadsheets. And because we also work with the Pathologists, the sort of Western Diagnostics there, we were also tangled in a system internal to the Pathology Department which was called – ‘Ultra’. Our data was captured in at least two different forms. We also had some data in REDCap as well. So, the data was there, and it was accurate, but it was incredibly difficult to extract anything from that. If anyone asks us – what number of whole blood samples we had, it was literally hours to pull that out of different systems and mend it together and almost impossible even at that stage, let alone how it would have been today. 

So, we did that around for a software solution, and we landed with OpenSpecimen. I have to say that we are incredibly pleased with OpenSpecimen. It took us a little while. The OpenSpecimen staff helped us do a legacy migration and bring all of our Legacy data into the system. It was tricky to get that done but now that it’s done and now that we have done a lot of work with the software and a lot of that is a credit to Courtney, who’s really our technical brain. Now that it’s done, and we continue to optimize the system, now that the point we’re at we have data that’s under control we know exactly what’s going on, we can extract data really easily, we can import data easily, the software interacts with our clinical systems or which runs in REDCap. We couldn’t be more pleased with what OpenSpecimen has done for us. I think in terms of technicalities Courtney how many users do we have?

Courtney: 

So, I think within the biobank we’ve got about seven people regularly accessing it –  data entry, data QC, pulling out, entering all the distribution details, and following up on return samples. So, we’ve got quite a big team that’s got access to it. The majority is our data entry I’d say at this point and the data QC.

Srikanth:

Do you give access to the researchers to look at the catalog of specimens?

Nina: 

I will say we’re quite picky about who we let into the system. So, it’s mainly our biobank staff and a couple of data-trained people who are allowed in there. So, we’ll say the software it’s incredibly useful, but we’ll also say I don’t think many people can kind of walk off the street and just use it easily. Given the amount of detail that we capture, it is quite an intricate system, and we feel that it’s not a good idea to have too many people in the system. We prefer to deal with inquiries and export data for them.

Srikanth:

When you get those inquiries, do you have a built dashboard of your data that people can look at?

Nina: 

Yes, that’s very much Miss Monroe’s business. 

Courtney: 

So, I guess when we’re working with the subprojects that are sort of expressing interests in sets of data or figuring out what we’ve got in there, there is quite a consultation process of figuring out exactly what they need, minimum required data of sample sets. So, a lot of that we pull out of OpenSpecimen, and we actually deal with it, I guess externally. When we’re reporting that information to them, they can pick their sample sets. We just find that that’s probably at this point the best way for us to get down to a bit of the nitty-gritty of exactly what combination of samples they need. And then also often they’re wanting to align that with our other clinical data, subproject data, subproject questionnaire data; so in that, we do a lot of that process outside OpenSpecimen. We really use it to initially just figure out what we’ve got, what’s available, what might we have already reserved for another subproject, just to minimize overlap but also to identify overlap where you might have some projects interested in the same samples from the same person just to really build a couple of collaborations in there.

Srikanth: 

We can take this offline, but one of the options you have is to build dashboards and catalogs for people without coming into the system. They don’t need to be registered users or log in, but they’ll still be able to see a very high-level broad overview of what you’re doing, and what kind of data you are collecting, and you can restrict it in many different ways. You don’t have to show all the fields, you don’t have to show even the data. You can just have graphs and an inquiry form or a request form.  

We are at the end of the podcast. One of the good things for us has been that you guys have been our lucky charm in Perth. Once we started working with you, we started working with many other centers in Perth. You guys have been a great reference for us. Our collaboration worked out pretty good for us too, so thanks a lot Nina and Courtney for such a wonderful productive session.