Dr. Kristin Shimano

One of the difficulties that we have in treating ITP is that there are a number of different therapies we can choose, but they haven't necessarily been compared directly against one another. And often I think for families, often it feels like it's a little bit just trial and error and people were just, you know, trying one thing and maybe it's going to work, maybe it's not. ITP, pediatric ITP is a relatively rare disease. And um to learn more about it, to advance the field, we really have to do things in a collaborative way

Narrator

Welcome to the PDSA podcast, Bruised but Not Broken: Living with ITP. The diagnosis of a bleeding disorder like immune thrombocytopenia may leave you wondering, how can I really live my life with ITP? PDSA's podcast, Bruised but Not Broken: Living with ITP, brings empowering stories, the latest research and treatment updates, lifestyle tips, and answers to the real life questions the ITP community is asking. Here’s your host for this episode, Barbara Pruitt.  

Barbara Pruitt

I can only imagine the anxiety that a parent feels when their child is diagnosed with ITP. Aside from seeing your pediatrician frequently and your child's hematologist, I'm sure when you're home in the quiet of your room, you're wondering, What else is going on out there? Are there any new findings? Is there any new research? are How about new advancements in understanding and treating ITP? Well, today we might have some answers for you, and at the very least, give you some hope for the future because today's guest is Dr. Kristen Shimano. She is a pediatric hematologist and a bone marrow transplant physician at the UCSF Benioff Children's Hospital in San Francisco, California. Dr. Shimano has a particular interest in immune cytopenias, including ITP. She currently is the operations committee chair of the ITP Consortium of North America. I know that's a mouthful and we call the ITP Consortium of North America ICON, I-C-O-N. So thank you for joining us today, Dr. Shimano.

Dr. Kristin Shimano

Thank you for having me.

Barbara Pruitt

Well, I'm looking forward to learning more about ICON. And um could you tell us about it? I'll let you start and just explain however you want to about what you are and what all ICON does.

Dr. Kristin Shimano

Sure. So, ICON is the pediatric ITP consortium of North America. It's a group of pediatric hematologists from around the U S and Canada and Mexico, um who have a particular interest and expertise in treating patients with it. It was established in 2012 and has grown quite a bit since then. We now have over 50 sites that participate. And the mission of icon is to be a collaborative research effort dedicated to improving understanding, treatment, and quality of life in pediatric patients with ITP.

Barbara Pruitt

So when you say you have 50 sites, what what is considered a site?

Dr. Kristin Shimano

So a pediatric hospital or pediatric hematologist within a hospital, wants to participate as a part of icon.

Barbara Pruitt

So do hematologists join? there's Is there a membership process or who makes up the membership?

Dr. Kristin Shimano

Yeah. So, members are pediatric hematologists from a variety of different, uh, children's hospitals and pediatric program, pediatric hematology programs around North America.

Barbara Pruitt

Okay, so we're talking we're talking about the United States and Canada.

Dr. Kristin Shimano

Sorry It's Canada and Mexico, so all of So there's over 50 sites and then multiple members from each site.

Barbara Pruitt

Any other countries involved? And Mexico. Great, great. And how many members do you have now?

Dr. Kristin Shimano

So quite a large number.

Barbara Pruitt

That's great. How often do you meet do you meet? I'm sure you meet virtually since you're spread out all over, correct?

Dr. Kristin Shimano

Right. Well, we have one annual in-person, it's actually a hybrid in-person virtual meeting once a year, which is really nice to get to see everyone together in one spot. But most of our meetings are virtual and the consortium has several different committees. And so each committee meets you know once a month or once every other month. And then within each committee, they're usually working on several different projects. And so, the different project groups may meet also on a regular basis, depending on what's going on with the projects.

Barbara Pruitt

How are the committees determined? Is it by disease or disorder or what is it that makes up the committee and how many are there?

Dr. Kristin Shimano

So there's four main committees within ICON, the biology committee, the quality committee, the interventional committee and the patient outcomes committee. And so all members of ICON are required to participate actively in one of the committees. And then within the committees, they work on ah research projects related to to that specific area. So the Interventional Committee works on projects related to interventions for ITP, whereas the Biology Committee works on projects related to understanding the underlying biology and why ITP happens.

Barbara Pruitt

Oh, that's interesting. So they can overlap then, I would think. Their findings from one committee is shared with another committee, and then they may choose to go further with that. Does that make sense?

Dr. Kristin Shimano

Yeah, absolutely. There's a lot of overlap and some projects may span multiple committees. And so, and now we are actually this year just started a database working group with that has participants from all of the different committees, because as we're establishing a database, those are all important things that we want to make sure that we're capturing. So, there's a lot of crosstalk people can be on multiple different committees and there's crosstalk between the committees projects that overlap. But the main idea of having those four large areas is that those are all important aspects to cover when we're thinking about, um, learning more about ITP.

Barbara Pruitt

Well, I think it's wonderful to hear you talk about this because that's telling us that you've got a lot of collaboration out there when it comes to research and findings, you know, that that the people dealing with it are actually communicating with each other, which is really such an important part. And I think as a patient...

Barbara Pruitt

You sometimes wonder, well, are they finding something out over here and not telling over there? But it sounds like you've got a wonderful collection of people that coordinate what their findings are.

Dr. Kristin Shimano

Yeah. I mean, I think that was really the genesis behind the, the consortium is that, you know ITP, pediatric ITP is a relatively rare disease. And um to learn more about it, to advance the field, we really have to do things in a collaborative way and um work with, with other pediatric hematologists around the country because, you know ah One person may have, you know one patient with a very severe, severe course, and they can learn from a patient, you know, from a hematologist elsewhere about how they've treated that patient. And to really understand the biology of the disease, you need to study many, many patients. And we can only do that by working together as a consortium.

Barbara Pruitt

Well, that's wonderful. Now, what have been some of the studies that you've done in the past? Could you explain those to us?

Dr. Kristin Shimano

One of our first studies that we did, ICON, was looking back at pediatric patients with ITP who had received second line therapies. And we were looking at what were the reasons that their physicians chose those particular therapies? How did they respond to those therapies? Because, you know, one of the difficulties that we have in treating ITP is that there are a number of different therapies we can choose, but they haven't necessarily been compared directly against one another.

And often I think for families, often it feels like it's a little bit just trial and error and people were just, you know, trying one thing and maybe it's going to work, maybe it's not. And we try the next one, um, which, um, you know, we don't necessarily have, uh, um, you know, a crystal ball at the beginning to say this therapy will work for this patient, right. That ultimately that would be great if we can have some biologic markers that tell us at the onset, this is a patient who's going to respond to this particular type of therapy. But right now we don't.

And so ICON was to really understand decision-making amongst physicians and why they were choosing different therapies. So that we learned a number of different things from that study. And one of the things that came out was that the reason patients pediatric patients are getting started on second-line therapies And quality of life was a really important reason. And so I think that's important for people to keep in mind that, you know obviously with ITP, one of the biggest things we worry about is bleeding, right? But that's not the only part of the disease. And when we're thinking about treating ITP, we also need to think about the patient's quality of life and how the treatments can have an effect on that.

Barbara Pruitt

Absolutely. And I'm so glad to hear you talk about that because years ago, that wasn't a consideration. It was, you know, strictly looking at the numbers, you know, where's what's the platelet count now? And if we try this, will it bring the platelet count up? But it's really, know, you know, a blend of, you know, how's the patient presenting themselves? How are they living their life? What do they need to do to make their life more robust? And keeping in mind what their platelet count is and how dangerous it is or how easy it is for them to continue. So, I understand that there was a complementary and alternative medicine study that ICON did. Can you tell us a little bit about that?

Dr. Kristin Shimano

Yeah, so that um was a project actually in collaboration with PDSA, um look using registry data, the PDSA registry data. And the goal was to characterize the experience of patients using complementary, alternative, and integrative medicine in ITP management. So That is this a project that's still ongoing. i think that the group working on that is hoping to publish findings soon. It looks like the you know a lot of patients, that's something that they're really interested in exploring. And it's an it's an area that there are not a lot of data about so I think it's an area for future research as well. But this is kind of a really helpful first step in terms of just describing how are these therapies being used.

Barbara Pruitt

Right. And I think it's a needed study to look at because I know patients are always asking, well, have you found that this, eating this or eating that or taking these or you know supplements, do they raise your platelet count? And I don't know, my experiences were still very, all of us are so very different and who knows what's gonna help in what direction. So, I think your study will be very interesting to read when it gets published. Can you tell me about that?

Dr. Kristin Shimano

Yes, this is a project that's actually being done in collaboration with PDSA um using their PDSA registry data. And the goal of the project is to look at the patient experience using complementary ah medications, alternative therapies, integrative medicine in the management of ITP And I think this is, you know, there are not a lot of data about outcomes using complementary medicines. So I think it's definitely an area that there needs to be a lot of future research in as well. But this is a really nice first step in terms of looking at just what the patient experience is. And I think the initial findings are that You know, patients are certainly very interested in exploring, complementary medications and, and including them in, as part of their ITP treatment.

Barbara Pruitt

Oh, I think that's wonderful. I think we'll all be interested in seeing that study when when it's published, because patients are always wondering what can they take, what can they eat, what can they do that might be beneficial to their platelet count and their overall health. And hopefully this will give them a little bit of guidance or insight into maybe some things that might be helpful. So, it's nice to know that you worked with the PDSA in gathering this information. And that was from the PDSA's ITP natural history study, correct?

Dr. Kristin Shimano

The PDSA registry, I think is a really, um, uh, resource and great study. And I think it's, you know, really important to, again, help learn more about a rare disease, a way for patients to be involved and, you know, give their own data and experience of, um, of being treated for ITP.

Barbara Pruitt

I think that's really great to know that um you've been able to get so much information from the PDSA's ITP Natural History Study Registry, because I know I've stressed this in other podcasts. It's so important for ITP patients to go on that registry and give their information about their history with ITP, maybe how it started and came about, and for parents of children to do the same, because that information is very valuable.

Dr. Kristin Shimano

Yes.

Barbara Pruitt

As you can see, ICON used that information in their current study. So, if you haven't gone on the website, which is pdsa.org, please do so and go to the registry because that information is invaluable. And it is anonymous, so you don't have to worry about your your privacy. um Your name is not associated with any of the information that you leave. So that's something I strongly encourage everyone to do. Back to ICON. Dr. Shimano, you did say that you have an annual meeting. Does that happen at the American Society of Hematology Conference or is it another time?

Dr. Kristin Shimano

Yes, we have a meeting just prior to the start of the American Society of Hematology conference every year. Since many of the any of our members are coming for that conference, we sort of tack on a meeting the day before, which is a, we've been really grateful for the support of PDSA to help sponsor that meeting and allow us all to get together in person share ah the ongoing work of the consortium and work on new projects in person.

Barbara Pruitt

Well, that's great. I'm happy to hear the PDSA helps you with that meeting because we're helping you and you're helping us for sure. So, the least we can do is help with your meeting. That sounds terrific. I know that a couple of your ICON members are members of our medical advisory board which is wonderful. And, I've had a few of them on the podcast in the in the past. And, and I know you personally have written an article for our e-news.

When you think it may not be ITP, which I'm sure every parent deals with. With the hit or miss that they go through with treatment, I'm sure they're wondering, is it not? you know And I know you wrote an article for our e-news, which was terrific. We appreciate that. Question, if a healthcare provider is interested in joining ICON or getting more information, how would they go about doing that?

Dr. Kristin Shimano

Yeah, so we have a website, icon-itp.org. And on there, there's a section for healthcare providers and with contact information if they're interested in learning more about the consortium or interested in joining. There's a memorandum of understanding that new sites sign to become part of ICON. And then, as I mentioned previously, everyone is required to participate in one of the committees.

Barbara Pruitt

Okay, so there's requirements. It's not just a matter of joining. It's you need to participate in that participation pretty much makes sure that they're on the top of their game when it comes to treatment, right?

Dr. Kristin Shimano

Yeah, make sure that they're an active and active participant in in helping with the ICON mission and you know furthering the research efforts. And yeah, we it takes a lot of work to do to do these studies, and it's a yeah big team effort.

Barbara Pruitt

That's great. That's great. Now, if you're a parent and wondering if there's an icon physician that they could take their child to is there a way they could find that out?

Dr. Kristin Shimano

Yeah, the website also has information for patients as well. And it has a list of the different consortium sites. So, if you look on there, there's a map and you can see, is there a an ICON site near you that you could ah that you could consider going to for your child's hematology care?

Barbara Pruitt

Oh, that, which is great. And again, your website, tell me again what your website is.

Dr. Kristin Shimano

It's I-C-O-N dash I-T-P dot O-R-G.

Barbara Pruitt

Well, I think you might be getting some hits on your website after this podcast. And hopefully more participation in the Natural History Study Registry. And hopefully, you know, more information that we can, the PDSA can give you and your organization so that more information is found out about ITP, the treatment, forward movement, et cetera. So, thank you again for being with us today. I know you're a very busy physician hematologist, and we really appreciate you taking the time out to spend with us and enlighten us. I'm sure you've alleviated a lot of concerns with parents that think they're standing still, that research is standing still. It's nice to know that there's such a wonderful group of hematologists that collaborate like yourself and sharing information and looking for answers. So, thank you.

Dr. Kristin Shimano

Great, thank you so much for having me. And thank you. It's been a great um partnership between ICON and PDSA as well. So, I think there's a lot of crosstalk between the two groups and we very much appreciate the PDSA support.

Barbara Pruitt

Well, that's wonderful to hear. I can't speak for the whole organization, but I'm sure anything you need, they're happy to supply when it comes to information about their parent patients with ITP. So, thank you again. Keep up the good work.

Dr. Kristin Shimano

Thank you.

Narrator

How do you live your life with a bleeding disorder like ITP? From working in the kitchen with knives, to navigating sharp corners in your house, going out to eat in a restaurant, traveling on a plane, attending a sporting event, even dancing at a wedding. ITP patient, Barbara Pruitt, shares her tips and tricks for moving through life with ITP for more than 60 years. Here's her lifestyle lesson for the day. 

Barbara Pruitt

Hi, my message for you today is enjoy your life. I know that's easy to say, but life teaches us lessons. And one thing I've learned is there are things in life you have control over, and there are things in life that you don't have control over. Things like the weather, traffic, even having an autoimmune disease, and the list goes on. But the things we do have control over, like our thoughts and our actions, those are the things that we need to concentrate on to bring enjoyment to our life. We don't get a do-over here. So every day that you have an opportunity to do something that makes you happy, take advantage of it. I know with ITP, we have limitations in what kind of actions we do. But that ends up being a part of your normal life. You know what you shouldn't do. You know what activities are dangerous for you. And depending on your platelet count and how you respond, sometimes you can go out and ride a bike and enjoy it. And sometimes you're not able to do that. So instead, take a walk if that's something that makes you happy. Think of all the things out there that bring you joy or happiness. Maybe it's having lunch with a friend, taking a vacation, taking a walk in the woods, playing cards, going dancing, whatever it is. Don't regret not taking the opportunity to do those things because you have the control overdoing that or not. You can make your life happy or you can make your life sad. So I choose to make it happy. That's it for now. Until next time, wishing you lots of happy, healthy platelets.

Narrator

Thanks for listening to the PDSA podcast, Bruised but Not Broken, Living with ITP. Made possible by our presenting sponsors, Amgen and Sanofi. Special thanks to Gus Mayorga for composing our theme music. To see what's coming up, visit our website at pdsa.org and subscribe wherever you get your podcasts. Please share this podcast through social media with anyone who you think might benefit from the information and stories we share with the ITP and other platelet disorders community. As always, please speak with a healthcare care professional before making any treatment decisions, but know that pdsa.org is a wealth of information and resources to help you navigate life with ITP and other platelet disorders. Remember, you are not alone.