false
Catalog
SCCM Resource Library
Curing Coma Initiative
Curing Coma Initiative
Back to course
[Please upgrade your browser to play this video content]
Video Transcription
Thank you for the invitation to participate at the SCCM, and thank you, George, for organizing the yearly review. My name is Jose Suarez, and I will speak to you about the Curing Coma Campaign, the actual logo of the Curing Coma Campaign. So what we're trying to do is we're trying to promote recovery of consciousness through early intervention and long-term support. In the outline of my talk, I will start by defining what coma means, and then I'll look at the coma ecosystem, the cost of coma, and then we'll go over and try to answer some of the compelling questions about coma, and hopefully I'll give you a little bit about the background and the history of the Curing Coma Campaign. So obviously when it comes to the definition of coma, what we're referring to is a lack of awareness of self with an inability to interact with and respond to one's internal and external environment. So essentially coma is a disorder of consciousness. So the person is not awake, the person is not aware, the person is unresponsive, and there are many causes of coma, including traumatic brain injury, stroke, heart attack, you know, severe infection, seizures, or drug overdose. The coma ecosystem essentially includes many stakeholders, right, so not only patients but also families, physicians, nurses, therapists, hospital administration, and of course government services as well that take care of them. Needless to say, coma is associated with a very high cost, both human cost and also society cost, right? So for example, if you look at TBI, there are over 55,000 deaths a year in the U.S., and also there is a lot of withdrawal of life support that occurs in patients with coma. There is an holistic approach to treatment of these patients, and as you can see, it costs a lot to society. It's estimated that the cost of coma exceeds $75 billion. So obviously there are compelling questions that families ask us, right, every day that we take care of patients in coma. One of them is, will my loved one wake up, right? And if so, you know, when will my loved one wake up? And will they fully recover, you know, from the coma? Those are the questions that we get, which we don't have any easy answers because we have a lot of gaps that we need to answer to, in order to answer these compelling questions, right? There is a lack of knowledge in the biological basis of consciousness, there's the million dollar question, and this is being called the heart problem, you know, how do we define the biological underpinnings of consciousness? There's a lot of variability when it comes to patient assessment. Patients are not that great at prognosticating, and the treatments are inconsistent, and patient care is also inconsistent. So obviously these are the needs when it comes to finding a cure for coma, right? We need to identify the key insights into why science hasn't yet solved this problem. We need to determine the scope of the research that is needed to address this problem, understand what capabilities are currently available, identify the new capabilities that we may need, also scope out the resources required, break down the barriers that exist to address this problem, define the risks and how they can be mitigated, and of course develop an action plan. Why has curing coma not yet been solved? And obviously there are many issues related to this here. One is because the problem had not been clearly defined before, there was no ability to identify the type and location of the defects that these patients have, the lack of the appropriate diagnostic tools, and of course, you know, researchers have also worked in silos up until now. Now with the Curing Coma Campaign, we're all coming together, right? And the research team did not include everyone, so did not always include patients, did not always include families or therapists or clergy or healthcare professionals. There is obviously a lack of appropriate funding, and up until now we did not have a champion or someone driving this. So obviously the Neurocritical Care Society took a bold initiative and launched in 2019 the Curing Coma Campaign to try to address all this. So everything started back in 2018, you know, when we had the fifth Neurocritical Care Research Conference that was set up in Boca Raton, Florida. We were trying to look, trying to define the future of Neurocritical Care Research, and we were really looking for a blue ocean. By that we meant we wanted to swim in blue water, so we didn't want to swim in red waters, you know, infested by sharks where everybody was competing for the same funding and for the same type of research. We wanted to create something new, so we brought a bunch of scientists, you know, together in total there were 103 that met, and then we tried to define the future, and then we came up with the idea that perhaps we should try to answer. So how is this problem being addressed at the moment? So obviously we wanted to have sort of a disciplined program management. We wanted to define technical tasks with specific milestones and deliverables, improve the communication to keep all that, everybody that is interested in this area to keep them well informed, and of course form some teams with complementary skills. So we got together and we tried to frame the initial scientific challenges, so we actually published this in a white paper in 2020. The proceedings are our first Curing Coma Campaign Scientific Advisory Council. So what about the program management? How do we address this issue? So obviously we had to create committees, so we had six members that were part of the executive committee member, and I'm one of them. Then we had to create scientific student committee members. We have 12, and then over 30 scientific advisory council members, and of course we needed a program manager to help us, so thank you Connor Burton. So we have eight, I created eight mission control modules. So as you can see there on the slide, you know, there's several modules that have specific tasks, you know, like engagement, community, collaborators, member sites, prospective data, coma data science, expert, liaison, implementation science, and people that were going to help us also develop an investigative toolkit, right? You know, I'll have objectives and milestones that have been established to make sure that everybody understood what they needed to do. We have seven scientific advisory council working groups, as you can see one of them is in charge of the deep dive science, common data elements, prospective studies, patient care, existing data, rules of engagement, and funding. So we also have obviously all the technical tasks, you know, deliverables, and of course it was the scientific tasks, you know, that a group of investigators that were charged with setting up the endotypes of coma, also helping us out with biomarkers, the proof of concept of clinical trials, and finally data analytics. So you can see this is a very complex, you know, tasks, you know, that need to be addressed and for that we needed to create people to help us. So we also with the early deliverable technical goals, of course we're from the endotype, we wanted to identify endotypes that will be amenable to treatment, that means going beyond the phenotype, we wanted to cluster a group of patients that perhaps will respond to certain treatments and not others, right? We also wanted to develop more of these biomarkers to correlate the endotypes with the clinical outcomes and also come up with more innovative proof of concept clinical trials for these patients. But of course we also needed to create the infrastructure and for that we needed to reach out to multiple societies over five continents to solve this problem. Obviously the care of the coma patient is also an important problem, right, a problem to solve because there is a lot of variance and a lot of variability and there is no, there is a lot of confounders, you know, that we obviously need to identify. We also need to identify and prioritize targets for scientific discovery in key domains, right, like timing of the intervention, assessments, the technology, the clinical expertise that is needed, and also along the continuum of care, right, not only during the acute hospitalization but also beyond. And we needed to sort of tie everything in and not have people work in on one aspect of it, for example, not just rehabilitation but also what about acute intervention. That was also important. We also thought that it will be key to come up with common data elements and for this we are actually partnering with NINDS similar to the other NINDS projects for common data elements that we have worked with. The idea behind this is that we want to make sure that we have common content standards that will enable us to do clinical investigations, to systematically collect, analyze, and share data across the research community. So, we wanted to make sure that regardless of where in the world these investigators are located, at least the language will be similar under the same conditions. Obviously, we also needed a deep dive into the science of coma, you know, to essentially define the unmet science and trying to develop tools and how to do a deep dive into the science of coma, right? We have five domains or five subgroups that are working into this. As I mentioned before, classification of phenotypes, biological mechanism, prognostication, therapeutics, and precision medicine. And obviously, we have set up gap analyses for those. We also thought that we needed to come up with a prospective study group that will help us create a prospective study to attempt to define coma better and the gaps. And of course, we also needed to address and get the message across. So, obviously, having the common data elements is a way to do it, right? Reaching out to all the investigators to use a common language. We also needed to publish several white papers, which we're doing right now. We have also set up the World Coma Day, and I'll show you, we'll have a slide for that. Also, a website needed to be set up, and we needed to reach out to funding agencies. So, we have reached out to NIH. We have secured funding from them to have this Curing Coma virtual symposium. Of course, it was in the middle of COVID. We have two meetings, the first one in September of 2020, and then the follow-up meeting in May of 2021. We've also set up World Coma Day. We have picked March 22nd of every year to be World Coma Day. So, we had a successful World Coma Day in 2021. Now, this will be the second World Coma Day in 2020. So, we also needed to form the problem, and I think we have. We have done this. We have teaming agreements. We have a diversity. A group, we're very inclusive. So, we're essentially moving forward, you know, with this. We have rigorous, regular reviews of milestones, and we're adding expertise to fill the gaps. We have regular updates to the NCS and also NIH. We're seeking funding. So, this is essentially the take-home message, you know. Much has been accomplished since the announcement of the Curing Coma Campaign in October 2019 at the 17th NCS Annual Meeting in Vancouver. We have many field leaders and NCS members that are actually involved in propelling this colossal mission. The goal of the campaign is to remain inclusive, like sort of the moonshot culture, adaptable, we learn as we go, and available. So, the global platform for coma science. And if you're interested in more information, you can find that in our website at curingcoma.org. That's where you'll find all the information. And again, this is just a summary of the overall structure. As you can see, we have mission control with the steering committee. We have an advisory council. We have working groups, and we have modules. Each one of those are actually have a specific task. And yes, there is some overlap, specifically with the prospective study groups, because we have to include information from both the working groups. So, these are the members of the mission control, of which I'm part of it. This is a big tag. There's a lot of investigators. These are the leaders from the working groups. So, you can see we're very diverse and inclusive from different areas of the world. And these are the modules, the lead participants in the modules that we have. Volunteers who are asking you to join the Curing Coma Campaign, please visit www.curingcoma.org. And we are still there. And if you have any questions, I'll be more than happy to answer them. Thank you very much for giving me the chance to talk to you about Curing Coma. I think we have a few minutes for questions. Thank you.
Video Summary
Jose Suarez spoke about the Curing Coma Campaign and its goal of promoting recovery of consciousness through early intervention and long-term support. He discussed the definition of coma as a lack of awareness and interaction with the environment, and the various causes and stakeholders involved in the coma ecosystem. The high cost of coma, both for individuals and society, was highlighted. Suarez addressed some of the compelling questions about coma, such as prognosis and recovery. He explained the challenges and gaps in understanding and treating coma, and how the Curing Coma Campaign aims to address these issues through collaboration, research, and infrastructure development.
Asset Subtitle
Quality and Patient Safety, Neuroscience, 2022
Asset Caption
This session will highlight the latest research, lessons learned, and changes taking place in critical care neuroscience as they may apply to clinical practice. Topics covered include the Curing Coma Campaign and diversity and inclusion in neurocritical care,
Meta Tag
Content Type
Presentation
Knowledge Area
Quality and Patient Safety
Knowledge Area
Neuroscience
Knowledge Level
Foundational
Knowledge Level
Intermediate
Knowledge Level
Advanced
Membership Level
Select
Tag
Evidence Based Medicine
Tag
Coma
Year
2022
Keywords
Curing Coma Campaign
recovery of consciousness
early intervention
coma ecosystem
prognosis and recovery
Society of Critical Care Medicine
500 Midway Drive
Mount Prospect,
IL 60056 USA
Phone: +1 847 827-6888
Fax: +1 847 439-7226
Email:
support@sccm.org
Contact Us
About SCCM
Newsroom
Advertising & Sponsorship
DONATE
MySCCM
LearnICU
Patients & Families
Surviving Sepsis Campaign
Critical Care Societies Collaborative
GET OUR NEWSLETTER
© Society of Critical Care Medicine. All rights reserved. |
Privacy Statement
|
Terms & Conditions
The Society of Critical Care Medicine, SCCM, and Critical Care Congress are registered trademarks of the Society of Critical Care Medicine.
×
Please select your language
1
English