Proceedings Summary: Second Curing Coma® Campaign NIH Symposium
Published on: June 15, 2022
Following the 1st NIH symposium held in September 2020, the National Institute of Neurological Disorders and Stroke (NINDS) collaborated with the Curing Coma® Campaign (CCC) to organize the 2nd Curing Coma NIH symposium. This was a 3-day virtual symposium held from May 3-5, 2021. The symposium was well attended, with 154 participants on day 1 and 127 participants on day 2, and this diverse group comprised content experts and stakeholders that included CCC leadership, NIH representatives, experts in coma science, and patient advocates. The final day of the symposium was a conference briefing that comprised a smaller group of 68 coma science experts who were specially invited to share their viewpoints.
The symposium focused its discussions on six major domains of the CCC including (i) Biology of Coma, (ii) Coma Databases, (iii) Neuro-prognostication, (iv) Care of Comatose Patients, (v) Early Clinical Trials, and (vi) Long-Term Recovery. Details of the discussions from the symposium can be found in the recently published proceedings paper,1 which we encourage you to read for a more comprehensive appraisal of these important topics. Additionally, details related to each domain and the objectives of the CCC have been separately published in the journal Neurocritical Care under the “Curing Coma” topic collection.2-9
The essence of the discussions during the 3-day symposium can be synthesized into 3 main points:
1. Major barriers that have prevented a cure for coma.
Existing barriers include:
- Absence of clearly defined key issues that will drive the future of coma care
- Inability to accurately pinpoint the pathobiological and neuroanatomic basis of coma on a patient level
- Lack of reliable diagnostic tools
- Current categorizations of coma and disorders of consciousness (DoC) that are based on clinical appearance rather than pathobiological mechanisms of injury
- Pervasiveness of a “lone wolf” mentality in coma research, some of which may be incentivized over more collaborative efforts by current funding structures
- Exclusionary rather than inclusive and diverse multi-disciplinary research teams
- Lack of sufficient funding
2. Existing gaps that need to be addressed to help find a cure for coma.
Important gaps emphasized during the symposium are depicted in the figure below:
3. Priorities of the Curing Coma Campaign.
Major priorities identified include:
- Improving patient outcomes using existing knowledge that should inform updated standards of care
- Understanding coma at the neuronal level, defining endotypes to understand the pathobiological nature and neuroanatomic location of coma on an individualized basis, and identifying potential differences in corresponding outcome trajectory
- Developing individualized targeted treatments based on endotypes to repair or retrain brain circuits
- Establishing prognostication tools with appropriate ethical considerations to eliminate clinical nihilism, reduce errors in withdrawal of life-sustaining therapy, and develop objective and empathic communication strategies with families and surrogates
- Establishing and implementing standards for conducting DoC trials aimed at addressing current gaps in DoC knowledge
- Developing and implementing databases that collect relevant clinical, imaging, electrophysiological, biological, epigenetic, and other data
- Ensuring that every trial, technical advancement, and research effort is transparent, complementary, and builds upon all other efforts
- Establishing an effective new approach for DoC research and clinical care, which involves the development of new models for centralized data and management centers
In summary, the Curing Coma® community has made significant progress since its inception. The CCC is committed to educating and galvanizing its stakeholders, upholding global standards for coma care, and improving the outcomes of patients with disorders of consciousness. The time is now to build collaborative efforts that can improve our understanding of the mechanistic underpinnings of coma and find ways to translate scientific discoveries into clinical practice.
The CCC serves as a centralized platform to propel a global, multidisciplinary, communicative, and synergistic approach to facilitate research and to drive education and implementation strategies across the continuum of coma care. Establishing a clear vision with multidisciplinary teams and defined milestones is key to the successful execution of this enormous undertaking, and the 2nd CCC NIH symposium was organized expressly for this purpose.
- Mainali S, Aiyagari V, Alexander S, Bodien Y, Boerwinkle V, Boly M, Brown E, Brown J, Claassen J, Edlow BL, Fink EL, Fins JJ, Foreman B, Frontera J, Geocadin RG, Giacino J, Gilmore EJ, Gosseries O, Hammond F, Helbok R, Claude Hemphill J, Hirsch K, Kim K, Laureys S, Lewis A, Ling G, Livesay SL, McCredie V, McNett M, Menon D, Molteni E, Olson D, O'Phelan K, Park S, Polizzotto L, Javier Provencio J, Puybasset L, Venkatasubba Rao CP, Robertson C, Rohaut B, Rubin M, Sharshar T, Shutter L, Sampaio Silva G, Smith W, Stevens RD, Thibaut A, Vespa P, Wagner AK, Ziai WC, Zink E, J IS. Proceedings of the Second Curing Coma Campaign NIH Symposium: Challenging the Future of Research for Coma and Disorders of Consciousness. Neurocrit Care. 2022. Epub 20220510. doi: 10.1007/s12028-022-01505-3. PubMed PMID: 35534661.
- Stevens RD, Diringer MN. Coma Science: The Territory and the Map. Neurocrit Care. 2021;35(Suppl 1):24-6. Epub 20210708. doi: 10.1007/s12028-021-01292-3. PubMed PMID: 34236620.
- Olson DM, Hemphill JC, 3rd. The Curing Coma Campaign: Challenging the Paradigm for Disorders of Consciousness. Neurocrit Care. 2021;35(Suppl 1):1-3. Epub 20210708. doi: 10.1007/s12028-021-01290-5. PubMed PMID: 34236618.
- Kondziella D, Menon DK, Helbok R, Naccache L, Othman MH, Rass V, Rohaut B, Diringer MN, Stevens RD. A precision medicine framework for classifying patients with disorders of consciousness: Advanced Classification of Consciousness Endotypes (ACCESS). Neurocritical Care. 2021;35(1):27-36.
- Luppi AI, Cain J, Spindler LRB, Górska UJ, Toker D, Hudson AE, Brown EN, Diringer MN, Stevens RD, Massimini M, Monti MM, Stamatakis EA, Boly M. Mechanisms Underlying Disorders of Consciousness: Bridging Gaps to Move Toward an Integrated Translational Science. Neurocrit Care. 2021;35(Suppl 1):37-54. Epub 20210708. doi: 10.1007/s12028-021-01281-6. PubMed PMID: 34236622; PMCID: PMC8266690.
- Hammond FM, Katta-Charles S, Russell MB, Zafonte RD, Claassen J, Wagner AK, Puybasset L, Egawa S, Laureys S, Diringer M, Stevens RD. Research Needs for Prognostic Modeling and Trajectory Analysis in Patients with Disorders of Consciousness. Neurocrit Care. 2021;35(Suppl 1):55-67. Epub 20210708. doi: 10.1007/s12028-021-01289-y. PubMed PMID: 34236623.
- Edlow BL, Sanz LRD, Polizzotto L, Pouratian N, Rolston JD, Snider SB, Thibaut A, Stevens RD, Gosseries O. Therapies to Restore Consciousness in Patients with Severe Brain Injuries: A Gap Analysis and Future Directions. Neurocrit Care. 2021;35(Suppl 1):68-85. Epub 20210708. doi: 10.1007/s12028-021-01227-y. PubMed PMID: 34236624; PMCID: PMC8266715.
- Claassen J, Akbari Y, Alexander S, Bader MK, Bell K, Bleck TP, Boly M, Brown J, Chou SH, Diringer MN, Edlow BL, Foreman B, Giacino JT, Gosseries O, Green T, Greer DM, Hanley DF, Hartings JA, Helbok R, Hemphill JC, Hinson HE, Hirsch K, Human T, James ML, Ko N, Kondziella D, Livesay S, Madden LK, Mainali S, Mayer SA, McCredie V, McNett MM, Meyfroidt G, Monti MM, Muehlschlegel S, Murthy S, Nyquist P, Olson DM, Provencio JJ, Rosenthal E, Sampaio Silva G, Sarasso S, Schiff ND, Sharshar T, Shutter L, Stevens RD, Vespa P, Videtta W, Wagner A, Ziai W, Whyte J, Zink E, Suarez JI. Proceedings of the First Curing Coma Campaign NIH Symposium: Challenging the Future of Research for Coma and Disorders of Consciousness. Neurocrit Care. 2021;35(Suppl 1):4-23. Epub 20210708. doi: 10.1007/s12028-021-01260-x. PubMed PMID: 34236619; PMCID: PMC8264966.
- Provencio JJ, Hemphill JC, Claassen J, Edlow BL, Helbok R, Vespa PM, Diringer MN, Polizzotto L, Shutter L, Suarez JI, Stevens RD, Hanley DF, Akbari Y, Bleck TP, Boly M, Foreman B, Giacino JT, Hartings JA, Human T, Kondziella D, Ling GSF, Mayer SA, McNett M, Menon DK, Meyfroidt G, Monti MM, Park S, Pouratian N, Puybasset L, Rohaut B, Rosenthal ES, Schiff ND, Sharshar T, Wagner A, Whyte J, Olson DM, Neurocritical Care Society Curing Coma C. The Curing Coma Campaign: Framing Initial Scientific Challenges-Proceedings of the First Curing Coma Campaign Scientific Advisory Council Meeting. Neurocrit Care2020. p. 1-12.