Beyond Genetics: Understanding Hereditary Cancer with Dr. Raymond Kim, Tamara Braid, and Katie Lark
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In this episode, we explore how the Ontario Hereditary Cancer Research Network (OHCRN) works with patients and researchers to improve prevention and care, and how linking with ICES data could support a better understanding of hereditary cancers across Ontario.
TRANSCRIPT
Misty Pratt
Welcome to In Our VoICES, the podcast that brings you the health data without the drama. Today, we’re diving into the world of hereditary cancer, an area where cutting edge research and personal experience come together to shape better care for individuals and families across Ontario. I’m delighted to introduce you to three guests from the Ontario Hereditary Cancer Research Network, or OHCRN, as we’ll call it, a provincial program that connects individuals with a higher genetic risk for cancer to researchers, clinical trials and support groups. Dr. Raymond Kim is a medical geneticist and hereditary cancer syndrome researcher and leads the OHCRN. Tamara Braid is a board-certified genetic counselor and clinical program manager of the OHCRN and Katie Lark is a BRCA1 carrier and an impassioned cancer awareness advocate dedicated to bridging the gap between clinical research and the patient experience. Welcome everyone to In Our VoICES.
Raymond Kim
Thank you for having us.
Misty Pratt
Raymond, can you tell us how OHCRN got started and what its purpose is today?
Raymond Kim
So OHCRN got started with a few meetings with the leadership at the Ontario Institute for Cancer Research. I’m a practicing medical geneticist who specializes in hereditary cancer and have seen and taken care of many patients who have these conditions and witnessed how they are under recognized in the healthcare system, but at the same time, have tremendous potential to inform about cancer in general, outside of themselves and also from their own perspective, an opportunity to prevent cancer before it happens, and learn how that may help other people throughout the province and the world. However, Ontario is a large province, and families live across many geographies, and collecting these patients and understanding them and ensuring that they have the proper care and information was a challenge.
And furthermore, the people who take care of these patients and research these families are also very separate. To that end, I approached the leadership at the Ontario Institute for Cancer Research, and I asked them if we could convene a working group on people who are interested in hereditary cancer in general, and that included lab geneticists, genetic counselors, physicians, patient partners and patient advocacy groups. And the idea is to capture every single person who had genetic testing, and through that, ascertain every single person who have been identified as a gene carrier, and then through that, provide this information to the scientific community and regroup the clinical community together. And the purpose is to really understand hereditary cancer patients further, improve their lives. And we know when we improve their lives together, that it will affect patients who have nonhereditary forms of cancer too, because we know when we have some advances in hereditary cancer patients they apply to their nonhereditary counterparts. So there’s multiple different layers that we would like to achieve with OHCRN from the clinical, scientific and patient partner perspective. And we’re really proud to have built a really large community that is all working together towards that same direction.
Misty Pratt
And I was surprised to read on the website that one in 10 people have hereditary or are estimated to have hereditary cancer. Would you say that most of those people know that they have this risk, or is that an estimate that includes people that don’t know?
Raymond Kim
There are some people who have a very strong family history and always knew that cancer was in their blood in some shape or form, and always thought they would have a gene mutation that they were born with that predisposes them to cancer. However, what we are discovering these days is there are lots of people who are also at high risk, and unbeknownst to them, harbor or carry a genetic change. So that’s where the movement towards more pervasive genetic testing throughout the community has happened. There’s been a movement to embrace cheaper genetic testing, which is happening because the technology advances, and incorporating that into who is getting genetic testing for what. And now the current standard of care in Ontario is a multi-gene panel to inform hereditary cancer patients. And in Ontario, we’re very fortunate to work with a very progressive government who has recognized this and put hereditary cancers as a priority at Ontario Health and the Ministry of Health, where many, many people have access to this as standard of care, where otherwise it was difficult to access genetics.
Misty Pratt
And how is the data then collected and used? So, if I suspect I have like I know I have, because perhaps there’s something in my family, I’ve seen people die from certain types of cancer. So, I decide I’m going to go and do this genetic test. Do I opt in to say, yes, I would like to share these results as part of this data? Or is it just implicit or implied, as the testing is done, that this data is stored and then used for research?
Raymond Kim
So, we always have to have informed consent for a patient to participate in a research study. There are elements of the standard of care that is exploratory and are within the confines of what is to inform a person’s standard of care, but that can’t be shared with scientists in a large, broad community. So that was a precise gap that we were recognizing, that we there was a lot of enthusiasm from the patients that wished their data could be shared, but there was no effective mechanism for that to happen, and that’s where, you know, we found heterogeneity between different groups who are studying patients and researching patients, and we thought we would harmonize all of that and streamline it so we can all work together under a set of common principles. So, in the end, a patient who undergoes genetic testing and is found to be gene positive or gene negative, they need to consent into a study to have that deeper dive into their information, for themselves, their family and for science. And that mechanism that we want to be across the province is OHCRN.
Misty Pratt
And so, then researchers, scientists would be accessing that data to do certain studies on specific types of cancers?
Raymond Kim
Yes, that is the idea is for us to be a infrastructure for scientists to access because we realize that scientists have had to reinvent the wheel, locally, on contracts, recruiting patients, finding them, getting the data associated with their medical history from the various different parts of the province and hospitals. I mean, that was very arduous. So we’ve identified almost every single person in the scientific community and clinical community that is interested in hereditary cancer, and it’s of hundreds of people in magnitude, and we really want to energize them into focusing some of these efforts together, so when they have a research question that they can come to us and we can help facilitate identifying the people and the data associated with it. And one of those data asset partners would, of course, be ICES.
Misty Pratt
Yes, and we’ll definitely get into that in a little bit. But it sounds like, in addition to, you know, reducing that, as you said, the arduousness of it, of just having to go through so many hoops and different processes, that there’s cost savings here as well.
Raymond Kim
Ideally, we would want to be an efficient system where the costs are being born centrally and shared amongst scientists and researchers and clinicians that otherwise would have been doing this on their own. So yes, we believe that, of course, some cost savings would be reaped and allow us to ask more sophisticated questions and more comprehensive questions by multiple different groups.
Misty Pratt
And Tamara, I’d like to bring you into the conversation. Are there any other benefits of having this centralized data, both for patient outcomes and for research in general?
Tamara Braid
What’s exciting about OHCRN is that we’re getting all of the data together in one place, as Raymond was describing. So, for any one person undergoing genetic testing in Ontario for hereditary cancer, their genetic test result lives in one place, maybe their cancer history and treatment data in another, family history somewhere else. And so OHCRN and in partnership with other data holders are, we’re bringing all of these disparate pieces together and then making de-identified data available to support research. And so to do this, we also have the unique opportunity that we’re able to re-identify participants. If they give us consent, and that way, we’re able to identify people who may qualify for active studies or clinical trials. And we hope that this will reduce disparities, because right now, what we see is that access to clinical trials depends largely on where you live, in Ontario, so you know someone in Toronto, for instance, has very different opportunities to participate in research than someone living, I don’t know, in Chatham or something so,
Misty Pratt
And is that the proximity, like the fact that you would have to travel in to do some of the testing, or to do whatever it is that’s part of the trial?
Tamara Braid
Yeah, exactly, proximity to large academic centers. And so, what we’re doing at OHCRN is bringing researchers together from all areas of the province and increasing access for patients to participate in research. And ultimately, if we’re able to centralize all of this data together to increase researchers access to data and also increase patient access to research, eventually, what we’re hoping to do is that, through research, clinicians will develop better screening tools, treatments and even preventative strategies like vaccines that will help patient outcomes for people with hereditary cancer, but also all forms of cancer.
Misty Pratt
So, Katie, this is maybe a good time to ask you to jump in here and talk a bit about your journey, and if you’re comfortable sharing and the impact that OHCRN has had on you?
Katie Lark
Sure. So, my journey is I always knew I had a family history of ovarian cancer. My dad’s mom, my grandmother, died from ovarian cancer at the young age of 40, when my dad was seven and his sister was 10. She had, was living at home for many years as a nurse suffering from ovarian cancer. My aunt chose not to have kids because of this, and then later on, post menopause, she developed ovarian cancer, then got genetic testing done, came back as BRCA1 positive. After that, she went to go have a prophylactic mastectomy and found breast cancer. My dad then got tested to go get, for the same mutation where he came back positive. I have a younger sister, and my sister, Ruth and I both got tested. I was 25 and she was 22 at the time. She came back negative, and was living in the University of Victoria at the time, so I was very happy that she came back negative. And I remember when I came back positive, the look on my mother’s face literally just, you know, it’s imprinted in my brain for the rest of my life. So, I started seeing local support groups here in Ottawa after that for a few years, and a few years later, I decided to have a double mastectomy at 27 and then a few years after that, I had a total hysterectomy as well as the salpingo-oophorectomy. So, I had my ovaries and fallopian tubes removed at the age of 30, which put me into surgical menopause.
And I am 36 now, the way that OHCRN has impacted my journey is that OHCRN is really just getting started. You know, we’ve launched the network in November. Things like this did not exist when I was going when I first found out about my genetic mutation, but knowing that it exists now, and being, have been on the steering committee for the past five years, and was the first patient partner to be part of this program. I am extremely passionate about it, and I know that this program is really going to change the way that we look at hereditary cancer in Ontario, because it’s going to connect patients with medical research to help find solutions for other and future patients.
Misty Pratt
Thank you for sharing that. It sounds like your family was really open to the testing that they, you know people wanted to know. And I I wonder, have you heard from others what barriers exist for for many individuals and families when seeking genetic testing? Maybe there’s some that you face too.
Katie Lark
When my aunt got tested, obviously, she got tested because she had cancer. It took a year for my father to get tested here in Ottawa, at CHEO. He had to wait to even book an appointment for a year, and then it took, like, another year to get the test results.
Misty Pratt
Why did he have to wait? Was that a requirement or?
Katie Lark
It just the way that they didn’t have anybody to do it. Their wait time was just so long kind of thing. It wasn’t that they didn’t have anybody to do it, it was just that there was, there was just a lag in the system kind of thing in the same with me and my sister, you know, we waited, we got, we went and saw the genetic counselor, and then we still had to wait another six months for our results after that.
Misty Pratt
Yeah, that’s a long time, and I’m sure a time of anxiety for you. Raymond or Tamara, maybe either one of you could answer this. Are there still a lot of barriers in terms of getting genetic testing covered?
Raymond Kim
There was significant barriers to genetic testing just five to six years ago, and things have changed quite significantly, locally and around the world. One of the bigger challenges of some people 10 to 15 years ago was that the BRCA gene was patented, and the patent it was lifted. We in Canada were a little bit immune to that patent, and then as soon as the patent was lifted, a lot of American genetic testing companies started moving into the space of testing. And then the technology got even better that it would be multi gene panel testing that otherwise was very expensive to consider. So now it costs the same price to interrogate 50 to 100 genes that cost the same price for testing one gene a decade ago. So that’s where the economies of scales have helped, and also the legislation has helped.
And then also the awareness, even though the test has become cheaper and covered by the government, the awareness of these types of conditions in people has gotten a lot stronger. There is something that’s called the Angelina effect, where Angelina Jolie has really increased the awareness of hereditary breast and ovarian cancer in terms of BRCA1. We’re very fortunate that we updated our guidelines in 2021 and now fully publicly funded. And it doesn’t have to be a genetics provider that orders a test. Anybody who has a medical license can order it if they fulfill the criteria, which are much more broad and getting broader by the year. And now it’s just really providing that practice change because to change practice in medicine, it often takes a generation. But in genetics, our practice changes very, very quickly. So, the genetics field needs to evolve and lead that evolution in other medical fields too. So it’s a big undertaking, and we do think that OHCRN will be a big part of that, in providing this education, providing this awareness, and making really a spotlight on hereditary cancer that otherwise was not the case.
Misty Pratt
It sounds like a lot of positive changes in the last five years. So going back to the piece about treatment options and about how this may shape a treatment plan. Katie, you know, from your perspective, what, what does hereditary cancer care look like, practically? Because for some people, it’s not a diagnosis, yet, it’s a piece of information, and yet that piece of information could lead to treatment decisions that need to be made. So, what’s that, what is that like for individuals?
Katie Lark
One thing that because my aunt when I told her that I came back positive when I was 25 obviously, we called her that day, when we got the results, she told me one thing that stuck with me for forever kind of thing for now, she says, “don’t look at it as Cancer with a big C. Look at it as cancer with a small c.” It’s like you are still high risk for cancer. You should still take care of yourself and be active and make sure to do the preventative stuff, and, you know, get the, you know, mammogram, MRIs, all the preventative ways that you can. But you don’t actually have cancer yet, so you’re still high risk, but you don’t have cancer, just make sure to be alert kind of thing.
As you said, I am one of those people that is high risk and didn’t have to go through treatment, and have knock on wood, have not had to go through treatment, and hopefully never will have to, but it definitely has changed the way that we look at things as patients. I know as running my support group, been going for the past 11 years that people have come and had the genetic testing, then go to do the, the MRI to have the preventative mastectomy, then they find breast cancer kind of thing at stage one. So, the genetic testing does help, and people who choose to do the preventative surgeries afterwards, you know they usually are lucky enough to find cancer, if they find cancer, early.
Misty Pratt
And in terms of their involvement, and your involvement in OHCRN, what is so important about being involved in research? What do you get from it?
Katie Lark
What I get from it is that I get to help people such as Tamara and Raymond, who have been studying genetics for 20 plus years, you know, for who have been studying medicine for their whole lives, or most of their lives, who know a lot more about this than I do, but I their work helps to change my life. Without patients, we wouldn’t be able to move research forward, you know. And OHCRN we’ll have lots of patients, we’re growing every day. And through these patients, researchers will have a bigger group and more diverse population to help their studies to be able to in learn more information about where they’re studying, about colorectal cancer, about breast cancer, about Lynch syndrome, about Li-Fraumeni syndrome, whatever you’re choosing to study. That without patients, we can’t have research, and without research, we have more pre-vivors like me. So, people who are high risk and didn’t have cancer.
Misty Pratt
Did you say survivors pre-vivors?
Katie Lark
Pre-vivors, yeah, that’s what we call ourselves.
Misty Pratt
Okay, I haven’t heard that term before.
Katie Lark
Yeah, so we’re people who are high risk for cancer, but didn’t have cancer. So, we aren’t survivors. We have prevented it. So, more people like me who prevented it and not less survivors, is the way I look at it.
Misty Pratt
And I’m sure the involvement, too, in the research, I’m guessing, would make people feel less alone, because you’re you’re part of something that’s moving whatever syndrome you’re dealing with, moving that forward in terms of our knowledge and what’s available. And Tamara, maybe I’ll bring you into this too as a genetic counselor, background in genetic counseling is what do you see as the importance of patients involvement in this?
Tamara Braid
I just had a meeting with a breast cancer advocacy group this week, and they were saying that genetics remains a black box for them, even though they’re in the breast cancer space, and it remains elusive for the people that they’re trying to serve and help. And I also hear from patients that they feel disconnected from genetics after their diagnosis, after they’re discharged from the genetics clinic. And so, what I want us to do in 2026 is work on building a community for hereditary cancer in Ontario and bring together all of these disparate groups doing really, really good work.
Cancer advocacy groups, hereditary cancer advocacy groups, the other registries, and researchers, clinicians, patients and government, and I see OHCRN as being the connector between all of those disparate groups. And to speak to the recruitment side, I’m really looking forward to building on the momentum that we have been building on. We only started recruitment a few months ago in November of 2025 so I’m looking forward to really getting the ball rolling in that direction and developing strategies to ensure that we’re reaching a diverse group of people so that researchers can identify gaps in care for folks from historically marginalized or underrepresented groups, and then clinicians can address those gaps in clinical care.
Misty Pratt
And Raymond, what are some of the current or upcoming projects at OHCRN that you are feeling excited about?
Raymond Kim
So one that is out of OICR and interconnected with OHCRN is a liquid biopsy, cell free DNA study, where we look at small bits of DNA that are released by tumor cells or peoples cells as they progress into a different physiologic state, where we believe that a patient who is a pre-vivor when they transition to a cancer patient, their cell free DNA signal changes and increases. So that is a very, very promising project where we hope to give people additional information on their cancer risk. Because wouldn’t it be great if we were to say to a person, “oh, your cancer risk in the next five years is rather low because your cell free DNA signal is rather quiet,” or “we think you are imminently going to get cancer, or, in fact, have cancer that we didn’t know that you had. You don’t have any symptoms, and otherwise we’re not monitoring that part of your body.”
Other studies that we are looking at is using novel imaging techniques. There is a whole imaging program at OICR that uses less invasive modalities of diagnostic imaging, for example, breast MRI and mammograms can be quite uncomfortable and cumbersome for people to endure. There are wearable opportunities by using ultrasounds for that. Similarly, MRI access is also very challenging, so other alternatives using radio tracers or other types of imaging modalities could be possible.
Another one that’s quite interesting is the role of theranostics, which is pairing the role of a radio tracer that targets a certain part of the body, the most well-known right now is PSMA. So, PSMA is a molecule that really tracks towards the prostate. A lot of gene carriers are at increased risk of prostate and actually that tracer can be activated to treat the cancer in the prostate, making it a great type of model for some hereditary cancer patients. And then finally, a couple of things that I would like to see come out of these is understanding what medicines we may give to people so they don’t get cancer. So that’s from the preventative aspect, and of course, trying to get some vaccines into some patients so they don’t develop cancer because they’ve been immunized against their specific syndrome.
Katie Lark
I can say firsthand that’s part of the reason why I had a double mastectomy is because after doing the MRIs, you know, just even a couple times, I had a panic attack after every single one. And so, I never, I told myself after the last one is I never wanted to do it again. And because I did it before I turned 30, I never entered the Ontario breast screening program where I would have had an MRI and a mammogram every six months, and that wasn’t ideal to me. And I know people who have come to my group who have had genetic testing done, and they don’t like the idea of having to go and get a mammogram and an MRI even every six months. And some people even have to get them, like, right after the other instead of getting them, you know, say in January, get the mammogram, and then in June, get the MRI kind of thing, instead of getting them at the same time. It just in in our head, as a patient perspective, it seems, if there is, it’s nice to hear that there we’re working on better ways to create preventative measures for tracing breast cancer earlier that aren’t mammograms or MRIs. As patients, they’re extremely uncomfortable and you know, I know firsthand that I would have rather do the ultrasound or even try this radio tracers things if it was available. And so, you know, I am happy to be part of OHCRN, and you know, provide my information to help move research like this forward.
Misty Pratt
You can’t see me, but I’m nodding very vigorously to all this. And I’m sure listeners are too, because we know the how uncomfortable mammograms can be, and yes, the follow up MRIs, given that it’s so hard to get into one a lot of people do have panic in them. So, I know for sure this is something many people will be excited to hear about. Just one question, what is a radio tracer?
Raymond Kim
So these are small molecules that are engineered by people who are in the nuclear medicine field and other types of radiologic ligand fields, where small molecules, depending on the biology, are infused into a person, and they circulate throughout the body and then can be detected by using diagnostic imaging. And that’s where the ‘radio’ part comes and the ‘tracer’ is the actual chemical itself. So, it’s an emerging field in clinical medicine known as theranostics, where the therapy and the diagnosis are married together and really, like with anything in cancer, hereditary cancer patients could be a very good test bed for these to be developed and refined.
Misty Pratt
I was imagining that movie from, I think it’s the 1980s where they, like, swallow something, these, like miniature people end up getting, I can’t remember what the movies called, all I’m picturing is they just these, a little like things roaming around your body.
Raymond Kim
But that actually happens, you know, there’s capsule endoscopy is, is one of the things that actually happens, and that’s, you know, swallowing a camera that goes into the small bowel, and then you can look at the small bowel to see if there are any lesions there. So, it’s not going to be too too far. In another area of medicine that is bridging is called nano medicine, where small particles that are not radio tracers, but are more little robot like materials are injected into people, and they have other medicinal effects that are being developed. So, lots of futuristic innovation happening where we believe that hereditary cancer patients can play a role.
Misty Pratt
Tamara, you and I have chatted about this, about how ICES and OHCRN can work together, and how we’ll work together in the future. Why do you think it’s important for organizations like ours to partner?
Tamara Braid
Ultimately, we want our registry to be useful to researchers and to be long-standing, because that’s how research will translate into change into clinical care and change in policy. And so, we built OHCRN to collect and centralize genetic data and genetics from tumor pathology, so we’ll have the hereditary cancer data- who carries which variants, what’s their family history? What are their biomarker results from their tumor testing? And we get this information as a participant registers into OHCRN, but this information, it’s a snapshot. It’s the snapshot of that patient’s journey so far at the time of registering, and then that data can become static.
And so, with ICES, they hold more of a long-term picture, cancer incidents, screening, health service use, treatment. And so individually, we have these two very valuable data sets, but linking them together will allow researchers get a very robust, complete view of hereditary cancer from genetic risk and diagnosis with the genetic test result through to their health outcomes. And so, through partnership with ICES, the data that we collect won’t become outdated. It’ll be dynamic and continue to grow. And so right now, we’re working with ICES to explore how to securely link our data sets together in a way that will allow researchers to answer complex questions like, what is the time from positive genetic test results to first recommended surveillance, or if a researcher wants to do a clinical trial for a preventative vaccine for patients with Lynch syndrome who have never had cancer before OHCRN with linked data, will be able to answer those questions or support, support those research questions. So, linkage with ICES means that data from all participants in OHCRN will translate into real improvements through research into cancer detection, treatment and prevention.
Raymond Kim
Those protective mechanisms and biomarkers of cancer protection, I think, is a real next frontier in understanding, and there is a big field in understanding how the genomic composition of a person interacts with the environment, but in the absence of a hereditary cancer gene, it’s very difficult to tease out what is having a big effect. I can imagine studying hereditary cancer patients very deeply, understanding those interactive aspects of what protects people from cancer is a real opportunity. So, I often wonder, you know, yeah, sure, a liquid biopsy may give me a lens into who’s going to develop a cancer, but why, where did that start is really still unknown, and I think a lot of people in the cancer research space have not really looked at it. The reason I bring this up is there’s a lot of epidemiologic information that is held within ICES that could help facilitate understanding some of these contributors to somebody developing cancers while others do not.
Misty Pratt
So it’s like our environment, of what how we grow up, our income levels, our education, like all of the things that make up who we are as a human could have an impact on well, I don’t know if it’s turned on and turned off. I don’t know if that’s the language, but maybe that the gene is actually leading,
Raymond Kim
Well, the simple fact is, is whether or not the second hit happens, right? Because you’re born with this genetic change, that’s the first the dogma of cancer biology is a first hit, second hit, and it can happen locally for non-hereditary cancer patients or the first hit happens when people are born, and that’s why people who have a hereditary cancer patients get cancer at a much younger age. What happens? What’s causing that second hit? Or what prevents it from ever happening? And if we figure out what prevents it from happening, how can we use that to protect people from cancer.
Misty Pratt
So having a much broader picture with ICES data could help down the road,
Raymond Kim
I believe so. Yes.
Misty Pratt
Yeah. Katie, I’ll just put this lastly to you, when you hear all of this in terms of linking this type of data with what’s held at OHCRN, how does that make you feel?
Katie Lark
I’m really excited about all of this kind of thing. I plan on sharing it all with my people in my support group, and trying to, every time I go, I try and get more people to register. I think that this is really going to help the way that we look at hereditary cancer in Ontario. It’s like the reason why we, I am so passionate about this is because I know that it’s gonna change the way that like people, like me, like we run our daily lives, and the way we think about it.
You know, for example, even though I’ve already had the preventative surgeries, and I know I’m considered low risk now, but I will always in the back of my head every time I feel a lump or something’s wrong, you know, oh, my God. Is it-is it cancer? You know? Is it- is it something going on? As Raymond was saying, this clinical study that they’re working on to do assess your risk of when is your, when do we think you’re going to get cancer? Kind of thing in the next few years is really gonna help ease patients like me, like help ease our mind kind of thing. I’m very hopeful for the future of cancer, hereditary cancer research, that this, this network, is really gonna change the way we look at things, even in the next five years. Yeah.
Misty Pratt
And on that note, if people are listening to this and want to get more involved with OHCRN, where should they start?
Tamara Braid
So, we are open to any person in Ontario of any age who has had genetic testing because of a personal or family history of cancer that’s suspicious for being hereditary. And it doesn’t matter what the result of the genetic test result is, whether it’s positive, maybe for something like a more common gene, like BRCA1 that Katie was speaking to earlier, or something more rare, like PTEN or VHL, or even if the result is negative, so a normal result or uncertain result, called a variant of uncertain significance, we have a really broad eligibility criteria, we’re looking to capture data on anyone who has had genetic testing for hereditary cancer in the province of Ontario, and our broad eligibility criteria is what sets us apart from other registries that have existed for a really long time and have done amazing work for very specific syndromes or genes, and enrolling is really simple. It’s driven by choice.
You can go to our online portal, which is on our website, OHCRN.ca, and people who are interested in joining can register themselves there, right on our website. We are also working with genetic counselors and geneticists around the province to get them to be able to refer any of their interested patients directly to our registry. And registering is easy. Katie has told me that, as she mentioned earlier, she’ll at her support group have people register, and it just takes them a few minutes. You just provide us with some basic information, like your name, your date of birth, and whether or not you’ve had cancer or have a family history of cancer, and where your genetic testing may have been done. And then at that point, we reach out to you get a copy of your genetic test results and your pathology results if you’ve had cancer, which can be we can get directly from you or from your doctor’s office, if you don’t have a copy. And then we use those reports, the genetic test results and the pathology results to complete your profile on our end, and then that data becomes de-identified, and is then going to be made available to researchers.
Misty Pratt
And we will put all of that information in the show notes so people know. But I think that last part of being de identified is really important to state that you’re not identified in the data, that this is anonymous once it’s been stripped,
Tamara Braid
Yes
Misty Pratt
Right. Well, thank you all so much for joining us today and sharing more about the important work of OHCRN.
Tamara Braid
Thank you.
Raymond Kim
My pleasure. Thank you.
Misty Pratt
Thanks for joining me for this episode of In Our VoICES. Check out the show notes for links to research and any other information that we’ve referenced in this episode. A reminder that the opinions expressed in this podcast are not necessarily those of ICES. Please be sure to follow and rate us on your favorite podcast app. If you have feedback or questions about anything you’ve heard on In Our VoICES, please email us at [email protected] and we will get back to you. All of us at ICES wish you strong data and good health.
