The Curing Coma Campaign (CCC) celebrated its 5^th anniversary during the 2024 Neurocritical Care Society (NCS) Annual Meeting with a comprehensive town hall meeting, reflecting on its progress and outlining its vision for the future. Launched in 2019 by NCS, the CCC was framed as a “moonshot” challenge to advance the science and care of disorders of consciousness (DoC). In only 5 years, the CCC has published 37 manuscripts, initiated key prospective initiatives like COME-TOGETHER SURVEY (completed) and COMPOSE (ongoing), and endorsed 9 funded grants. Community-building initiatives such as World Coma Day and patient-family projects like "Stories of Hope" have strengthened stakeholder engagement by reaching over 40,000 people. Despite the challenges posed by the COVID-19 pandemic, the CCC successfully adapted to virtual collaboration, demonstrating resilience and commitment.

Looking ahead, the CCC is guided by a 10-year roadmap focused on defining coma endo-phenotypes, building clinical trial readiness, and developing therapeutic interventions through pilot and proof of concept trials. The campaign’s ambitious plan involves global collaboration and multidisciplinary participation, inviting contributions from clinicians, researchers, and advocates to promote recovery of consciousness through innovative interventions as well as long-term support.

Key Milestones Over the Past 5 Years

Key milestones highlighted during the town hall included the development of Common Data Elements (CDEs) to standardize data collection across coma and DoC research and thereby enable more effective collaboration. These elements underwent public review and are freely available to researchers worldwide (https://zenodo.org/records/12811331). As one of the major initiatives of the CCC, ‘World Coma Day’ was also highlighted for its role in fostering global collaboration, with future events aimed at expanding engagement with patients and families. Meanwhile, discussion of the recently developed Patient Family Advisory Council (PFAC), an initiative of the CCC’s Community of Collaborators module, underscored the importance of integrating stakeholder voices into research and education and further enhancing the campaign’s community-driven approach. Despite these achievements, critical gaps remain, including the establishment of a prospective patient registry, refining the campaign’s research role, and ensuring long-term funding sustainability. The CCC also showcased its growing network of global collaborations through a publication connectome, reflecting the novel partnerships built through shared research interests and efforts.

Expanding Research Foundations

The Coma Science Working Group within the CCC has been instrumental in defining scientific priorities for understanding and treating DoC. Its mission centers on identifying knowledge gaps and brainstorming ways to address them through international collaboration and specialized working groups. By convening international experts, the module has emphasized the importance of understanding the underlying mechanisms of coma and DoC as a foundation for developing effective interventions. Key activities include producing gap analyses and white papers that outline the current state of research and pinpoint critical areas for improvement. Early working groups (Phase I and II) focused on prognostic modeling, precision medicine frameworks for classifying DoC, and therapies aimed at restoring consciousness. Subsequent efforts will continue to expand further to encompass clinical trial design, brain-computer interfaces, and the use of artificial intelligence for computational modeling of consciousness. Currently, Phase III initiatives involve research in low-resource settings, integrating AI into coma science, exploring regenerative medicine approaches, and examining the philosophy of consciousness. Despite these gap analyses, establishing sustainable funding for coma science remains an unmet need. By integrating global expertise, the module continues to inform clinical and research priorities, inviting further participation to address funding challenges and explore new scientific avenues.

The CCC’s scientific mission continues to expand through various collaborations. One example is the CHORUS project, which was funded by the NIH under the Bridge2AI program. This ambitious open-source initiative aims to integrate diverse data modalities, including electronic health records, diagnostic imaging, waveforms, and social determinants of health, into a centralized repository. With a goal of 112,000 patient datasets, CHORUS has already collected data on 29,000 patients, tackling challenges such as interoperability, pixel-embedded identifiers, and divergent terminologies. The project has adapted over 1,100 common data elements from the CCC to ensure consistency and has introduced tools for data visualization and multimodal analysis. By emphasizing geographic and socio-economic disparities in care, CHORUS exemplifies the importance of democratizing data science for clinical research. Platforms like GitHub enable the publication of code as open-source, promoting transparency and accessibility. Additionally, the group has initiated the AIM AHEAD training program, which will mentor 30 researchers to effectively leverage this infrastructure for advancing knowledge in coma science.

Module Initiatives: Connecting Teams and Building Awareness

The Engagement Module of the CCC focuses on improving outreach to the general public, caregivers, and medical providers. Initiatives for 2025 include developing practical resources for families and building a robust “Resources for Providers” page on the CCC website. The patient family advisory council will help identify unmet needs, and surveys will be launched to guide future efforts. To enhance membership, the module is recruiting volunteers to contribute to content creation and outreach, with significant 2025 milestones including updated resource pages by mid-year and a social media campaign launch in August. These efforts will bridge silos, foster broader awareness, and enhance the campaign’s impact on transitions of care and recovery outcomes.

The Education Module complements these efforts by creating and disseminating comprehensive educational content for professionals as well as patients and families. It targets multidisciplinary care teams and focuses on areas such as diagnosis, treatment, prognostication, long-term outcomes, and family resources. Using a tiered approach, the module has reviewed existing materials on DoC, identified gaps, and gathered input through surveys conducted during World Coma Day. The upcoming IRB-approved international survey will further refine educational priorities. Accessible formats such as webinars, online courses, and multilingual resources will be prioritized based on survey feedback, addressing barriers like financial constraints and technology access. This module is led by a multidisciplinary team dedicated to consolidating and globally disseminating these resources to diverse healthcare and resource settings.

Funding Strategies: Creating Value Propositions

Finally, the town hall discussion shifted to the campaign’s funding mechanisms, underscoring the importance of presenting a compelling value proposition to secure diverse funding sources. The CCC’s leadership is revising research priorities and developing a strategic funding plan by the end of 2024. Efforts include engaging with foundations, federal agencies like the NIH, HHS, and DoD, as well as corporate consortia. Innovative models such as shared-resource frameworks and joint development initiatives with industry partners were proposed during the town hall as a means to ensure sustained financial support. The campaign aims to transition from reactive to proactive strategies, leveraging relationships and white papers to influence requests for proposal generation and advocating for cost-saving initiatives such as reducing ICU stays for coma care. This multifaceted approach is crucial for sustaining research and advancing quality improvement programs.

***

The 5-year celebration of the CCC showcased a wealth of progress and reaffirmed an ambitious vision for the future. The session featured a dynamic blend of campaign updates and interactive Q&A, fostering the generation of fresh ideas and perspectives. Through its focus on collaboration, innovation, and community engagement, the CCC remains poised to advance the science and care of coma recovery. Researchers, clinicians, and advocates are invited to contribute to this global initiative by sharing "Stories of Hope," participating in World Coma Day, and engaging with the campaign’s diverse modules. For further insights, the full town hall event can be viewed at this link: https://www.youtube.com/watch?v=z3KT3enBaCE