Member Sites Module of Curing Coma®: The Journey So Far
Published on: October 11, 2021
Curing Coma® is the signature clinical, scientific, and public health effort of the Neurocritical Care Society. Curing Coma is comprised of several modules, all of which share the common goal of advancing the campaign’s mission (1, 2). The role of the Member Sites module is to create and maintain a platform that engages and facilitates multidisciplinary participation from various centers of care such as hospitals, academic institutions, and health care systems. Following this mission, the Member Sites module has made several advancements and achieved several milestones for Curing Coma. In this article, we summarize these advancements and “wins.”
Structure of Member Sites
The structure of the member sites module is comprised of two co-chairs and various regional partners representing all major geographical locations across the globe (Figure 1). Regional partners were identified through outreach efforts and engagement invites. We included participants who represented diverse specialties who also provided care for comatose patients. As a result, the membership includes pharmacists, nurses, advanced practice providers, physical, occupational, and speech therapists, and physicians from various specialties such as neurological critical care, anesthesia critical care, physical medicine and rehabilitation, and neurosurgery. We strive for equity and diversity in representation. Lastly, our module created objectives in close collaboration with other Curing Coma modules to maximize overall outcomes.
Creating Worldwide Curing Coma Sites
A primary objective of the member sites module is to create a comprehensive worldwide group of collaborators. Initially, we approached the collaborators from the Neurocritical Care Research Network (NCRN) who had actively participated in other clinical research activities associated with NCS. Furthermore, we contacted the collaborators from the PRINCE and INSIDER studies, with help from Dr. Jose Suarez (PI). Finally, we reached out to the regional chapters and international partners of NCS, including the Latin American Brain Injury Consortium (LABIC), Sociedad Argentina De Terapia Intensiva (SATI), Brazilian Research in Intensive Care Network (BRiCNET), Australia and New Zealand Intensive Care Society (ANZICS), and Canadian Critical Care Trials Group (CCTG), to name a few. All of our partners showed enthusiasm towards participating and agreed to publish announcements on their web platforms.
Across the spectrum of neurological studies, Africa remains under-represented. Therefore, we invested additional efforts to recruit collaborators from Africa's Northern, Eastern, and Sub-Saharan regions. Through our outreach initiatives, we successfully incorporated collaborators from Ethiopia, Kenya, Zambia, Mozambique, Namibia, and South Africa, creating a broad representation from the African continent in the Neurocritical Care Society for the first time. Of note, we especially appreciate the Ethiopian Neurological Association (ENA) for their efforts in advancing the society's presence and outreach.
Member Sites Milestones
The First Curing Coma NINDS research conference was hosted virtually on September 9 and 10, 2021. This conference discussed important concepts of coma such as a) the definitions of endotypes and phenotypes, b) biomarkers, c) designing and conducting proof of concept clinical trials, d) challenges and limitations of prognostication and long-term recovery, and e) the development and utilization of large datasets (3). The proceedings are published in a recent supplement of the Neurocritical Care journal, and we encourage Currents readers to review them (4-8), especially since the journal is providing free access for a limited time. The member sites module was instrumental in recruiting 472 registrants who actively contributed to the conference and its proceedings.
World Coma Day (WCD) was the signature event, where educational activities creating awareness and education for disorders of consciousness spanned the global population around the clock on March 22, 2021. The first WCD was a resounding success with 1200 participants in the event. This is a testament to the continued outreach efforts and ambassadorship of the advocates who work within the Member Site module. Readers can find details and recordings of the conference in the links at the Curing Coma Campaign website (9).
Countries that participated in World Coma Day
One of the outcomes of WCD was the launch of the “COMa EpidemioloGy, Evaluation, and THERapy" (COMEtoGETHER) survey, which aimed at understanding variability in coma definitions, etiologies, treatment strategies, and attitudes toward prognosis among clinicians who care for comatose patients. To obtain global participation in this study, the Member Sites ambassadors helped recruit 258 responders from 41 countries through their associations with various organizations and research groups as mentioned above. The responders were from diverse backgrounds of care, physicians, therapists, nurses, and advanced practice providers who worked both in acute care and rehabilitation settings. This study provides insights into the variability of the understanding, definition, and management of coma patients. The study results are under consideration for publication, and Currents readers are encouraged to stay tuned in order to obtain exciting updates following the manuscript release.
The Second Curing Coma NINDS conference was hosted virtually from May 3-5, 2021. The worldwide attendance for this event was around 300 participants. Prime research priorities addressed in this meeting can be broadly classified into defining coma and disorders of consciousness; research priorities for the biology of coma; research priorities for a coma database; research priorities for prognostication; research priorities for care of the patient in coma; research priorities for early clinical trials; research priorities for long-term recovery; and ethical considerations for the patient in coma. Individuals from the Member Sites module contributed to this conference by serving as panelists, speakers, and content generators.
Looking Forward to a Collective Future
Our module has been abuzz with activities for the last year despite all of the challenges that 2020 posed globally, and it has only served to energize our ambassadors. We have set a charter to generate more outreach, include neuro-rehabilitative centers from all corners of the world, enhance CC visibility via representation at regional conferences, and collate a comprehensive list of every center with the necessary resources to conduct research supporting a cure for coma. And to Currents readers, we earnestly request that you continue your support to the Curing Coma by signing on as a collaborator, and to encourage your colleagues and collaborators to do the same here.
- Shraddha Mainali MSH-YC, MD, MSc; Molly Mcnett, PhD, RN, CNRN; Jennifer Kim, MD, PhD. The Curing Coma Campaign 2020 [Available from: https://currents.neurocriticalcare.org/currents/blogs/currents-editor/2020/01/16/the-curing-coma-campaign.
- Olson DM, Hemphill JC, 3rd, Curing Coma C, its Executive C. The Curing Coma Campaign: Challenging the Paradigm for Disorders of Consciousness. Neurocrit Care. 2021;35(Suppl 1):1-3.
- Claassen J, Akbari Y, Alexander S, Bader MK, Bell K, Bleck TP, et al. 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.
- Edlow BL, Sanz LRD, Polizzotto L, Pouratian N, Rolston JD, Snider SB, et al. Therapies to Restore Consciousness in Patients with Severe Brain Injuries: A Gap Analysis and Future Directions. Neurocrit Care. 2021;35(Suppl 1):68-85.
- Hammond FM, Katta-Charles S, Russell MB, Zafonte RD, Claassen J, Wagner AK, et al. Research Needs for Prognostic Modeling and Trajectory Analysis in Patients with Disorders of Consciousness. Neurocrit Care. 2021;35(Suppl 1):55-67.
- Kondziella D, Menon DK, Helbok R, Naccache L, Othman MH, Rass V, et al. A Precision Medicine Framework for Classifying Patients with Disorders of Consciousness: Advanced Classification of Consciousness Endotypes (ACCESS). Neurocrit Care. 2021;35(Suppl 1):27-36.
- Luppi AI, Cain J, Spindler LRB, Gorska UJ, Toker D, Hudson AE, et al. Mechanisms Underlying Disorders of Consciousness: Bridging Gaps to Move Toward an Integrated Translational Science. Neurocrit Care. 2021;35(Suppl 1):37-54.
- Stevens RD, Diringer MN. Coma Science: The Territory and the Map. Neurocrit Care. 2021;35(Suppl 1):24-6.
- Fugate JE, Moore SA, Knopman DS, Claassen DO, Wijdicks EF, White RD, et al. Cognitive outcomes of patients undergoing therapeutic hypothermia after cardiac arrest. Neurology. 2013;81(1):40-5.