Role of project leader:
- need to be DOC SIG members
- involve other DOC SIG members and coordinate efforts (by email or video/phone calls)
- responsible for the accomplishment of the project and drafting of the manuscript
- need to attend DOC SIG meeting to update on the project (if not possible, updates have to be sent by email prior to meeting to the appropriate DOC SIG subgroup leader)
Ongoing and Closed Projects of the DoC-SIG
The Disorders of Consciousness Special Interest Group (DoC-SIG) is a very involved group within the International Brain Injury Association that is continually working on research and collaborations.
Diagnosis/Prognosis subgroup
CLOSED PROJECTS
Scoping review on diagnostic/prognostic procedures in paediatric DoC
- Co-Lead: Drs Erika Molteni and Beth Slomine
- To review the existing literature on neurobehavioral tools and MRI for the diagnosis and prognosis of pediatric patients with DoC.
- Publication: Molteni E, Canas LDS, Briand MM, Estraneo A, Font CC, Formisano R, Fufaeva E, Gosseries O, Howarth RA, Lanteri P, Licandro GI, Magee WL, Veeramuthu V, Wilson P, Yamaki T, Slomine BS; as the Special Interest Group on DoC of the International Brain Injury Association (IBIA-DoC SIG). Scoping Review on the Diagnosis, Prognosis, and Treatment of Pediatric Disorders of Consciousness. Neurology. 2023 Aug 8;101(6). doi: 10.1212/WNL.0000000000207473.
American and European Guidelines on Disorders of Consciousness: a follow-up from clinicians
- Lead: Dr Michele Farisco
- To set up a survey starting from the main recommendations, scientific data, and theoretical premises of the recent guidelines on DoC published by the European Academy of Neurology and the American Academy of Neurology, in order to explore clinicians’ opinions about their reliability, relevance, and applicability in different clinical contexts.
- Publication: Farisco M, Formisano R, Gosseries O, Kato Y, Koboyashi S, Laureys S, Lejeune N, Martial C, Matar A, Morrisey AM, Schnakers C, Yakufujiang M, Yamaki T, Veeramuthu V, Zandalasini M, Zasler N, Magliacano A, Estraneo A; IBIA Special Interest Group on DoCs. International survey on the implementation of the European and American guidelines on disorders of consciousness. J Neurol. 2024 Jan;271(1):395-407. doi: 10.1007/s00415-023-11956-z.
Pain Assessment Project
- Lead: Dr Rita Formisano
- To compare behavioral responses to customized painful stimuli selected from caregiver reports versus standard painful stimuli (i.e., fingernail bed pressure). Behavioral responses assessed by the NCS-R were recorded, compared, and correlated with CRS-R scores.
- Publication: Formisano R, Aloisi M, Ferri G, Schiattone S, Estraneo A, Magliacano A, Noé E, Pérez MDN, Hakiki B, Romoli AM, Bertoletti E, Leonardi G, Thibaut A, Martial C, Gosseries O, Brisbois M, Lejeune N, O’Valle M, Ferri J, Frédérick A, Zasler N, Schnakers C, Iosa M. Nociception Coma Scale-Revised with Personalized Painful Stimulus Versus Standard Stimulation in Persons with Disorders of Consciousness: An International Multicenter Study. J Clin Med. 2024 Sep 18;13(18):5528. doi: 10.3390/jcm13185528.
Behavioral checklist to facilitate DoC assessments
- Lead: Kristen Keech
- To develop and explore the feasibility of an evidence-based bedside neurobehavioral checklist aimed at minimizing inconsistencies in evaluation, optimizing patient-related and environmental factors, reducing examiner bias, and improving the accuracy of DoC assessment across the continuum of care.
- Publication: Keech K, Schnakers C, Murtaugh B, O’Brien K, Slomine B, Briand MM, Formisano R, Thibaut A, Estraneo A, Noé E, Gosseries O, da Conceição Teixeira L. Optimizing Neurobehavioral Assessment for Patients with Disorders of Consciousness: Proposal of a Comprehensive Pre-Assessment Checklist for Clinicians. Brain Sci. 2025 Jan 15;15(1):71. doi: 10.3390/brainsci15010071.
International Survey on diagnostic and prognostic procedures for adult population
- Co-Leads: Drs Rita Formisano and Anna Estraneo
- To compare diagnostic and prognostic procedures for adult patients with DoC across countries and clinical settings.
- Publication: Formisano R, Giustini M, Aloisi M, Contrada M, Schnakers C, Zasler N, Estraneo A. An International survey on diagnostic and prognostic protocols in patients with disorder of consciousness. Brain Inj. 2019 May 30;33(8):974-984. doi: 10.1080/02699052.2019.1622785.
International Survey on diagnostic and prognostic procedures for paediatric population
- Co-Leads: Drs Erika Molteni and Beth Slomine
- To investigate diagnostic and prognostic procedures routinely used by international professionals to assess children with DoC; to explore the use and availability of internal and national guidelines for pediatric DoC; and to identify international differences in diagnostic and prognostic protocols.
- Publication: Molteni E, Slomine B, Castelli E, Zasler N, Schnakers C, Estraneo A. International Survey on Diagnostic and Prognostic Procedures in Pediatric Disorders of Consciousness. Brain Inj. 2019 Jan 19;33(4):517-528. doi: 10.1080/02699052.2019.1565899.
Covert cognition Task Force
- Lead: Dr Caroline Schnakers
- To address the diagnostic challenge of covert cognition in patients with DoC through a meta-analysis aimed at identifying demographic variables more likely to be associated with responses to active paradigms.
- Publication: Schnakers C, Hirsch M, Noé E, Llorens R, Lejeune N, Veeramuthu V, De Marco S, Demertzi A, Duclos C, Morrissey AM, Chatelle C, Estraneo A. Covert Cognition in Disorders of Consciousness: A Meta-Analysis. Brain Sci. 2020 Dec 2;10(12):930. doi: 10.3390/brainsci10120930.
Multi-center longitudinal study on prolonged DoC
- Lead: Dr Anna Estraneo
- To identify clinical findings and neurophysiological patterns that can be easily recorded in daily practice and have high prognostic value for short-term (6 months), long-term (12 months), and very long-term (24 months) clinical outcomes in patients with prolonged DoC.
- Publication: Estraneo A, Fiorenza S, Magliacano A, Formisano R, Mattia D, Grippo A, Romoli AM, Angelakis E, Cassol H, Thibaut A, Gosseries O, Lamberti G, Noé E, Bagnato S, Edlow BL, Chatelle C, Lejeune N, Veeramuthu V, Bartolo M, Toppi J, Zasler N, Schnakers C, Trojano L; IBIA DoC-SIG. Multicenter prospective study on predictors of short-term outcome in disorders of consciousness. Neurology. 2020 Sep 15;95(11). doi: 10.1212/WNL.0000000000010254.
Estraneo A, Magliacano A, Fiorenza S, Formisano R, Grippo A, Angelakis E, Cassol H, Thibaut A, Gosseries O, Lamberti G, Noé E, Bagnato S, Edlow BL, Chatelle C, Lejeune N, Veeramuthu V, Bartolo M, Mattia D, Toppi J, Zasler N, Schnakers C, Trojano L. Risk factors for 2-year mortality in patients with prolonged disorders of consciousness: An international multicentre study. Eur J Neurol. 2022 Feb;29(2):390-399. doi: 10.1111/ene.15143.
Visual pursuit and fixation in DoC: Delphi study
- Lead: Dr Berno Overbeek
- To develop consensus on the operational definition and assessment of visual pursuit and visual fixation in patients with DoC using the Delphi method.
- Publication: Overbeek BUH, Lavrijsen JCM, van Gaal S, Kondziella D, Eilander HJ, Koopmans RTCM. Towards consensus on visual pursuit and visual fixation in patients with disorders of consciousness. A Delphi study. J Neurol. 2022 Jan 10. doi: 10.1007/s00415-021-10905-y.
What are the names for covert cognition?
- Lead: Dr Caroline Schnakers
- To review the literature to understand how this clinical entity has been named over time, clarify the rationale behind each term, and open an informed debate on the topic.
- Publication: Schnakers C, Bauer C, Formisano R, Noé E, Llorens R, Lejeune N, Farisco M, Teixeira L, Morrissey AM, De Marco S, Veeramuthu V, Ilina K, Edlow BL, Gosseries O, Zandalasini M, De Bellis F, Thibaut A, Estraneo A. What names for covert awareness? A systematic review. Front Hum Neurosci. 2022 Aug 5;16:971315. doi: 10.3389/fnhum.2022.971315.
ONGOING PROJECTS
Covert Awareness Task Force
- Lead: Dr Caroline Schnakers
- To inform future taxonomy of covert awareness-related conditions by assessing expert agreement on terms such as covert awareness, functional locked-in syndrome, MCS*, and cognitive motor dissociation.
- Publication: Schnakers C, Bauer C, Formisano R, Noé E, Llorens R, Lejeune N, Farisco M, Teixeira L, Morrissey AM, De Marco S, Veeramuthu V, Ilina K, Edlow BL, Gosseries O, Zandalasini M, De Bellis F, Thibaut A, Estraneo A. What names for covert awareness? A systematic review. Front Hum Neurosci. 2022 Aug 5;16:971315. doi: 10.3389/fnhum.2022.971315.
Pediatric Task Force – Phase 2
- Lead: Dr Erika Molteni
- To perform a single-case meta-analytical review of all published pediatric DoC cases following the previous scoping review.
- Publication: Ongoing project.
DNA in Prolonged DoC
- Lead: Dr Caroline Schnakers
- To assess genetic markers, including BDNF, ApoE4, and COMT, in patients with severe brain injury and explore their association with functional and consciousness outcomes.
- Publication: Ongoing project.
Eye Blinking in DoC
- Lead: Dr Alfonso Magliacano
- To investigate the diagnostic and prognostic value of spontaneous eye blink rate and related blink features in patients with DoC.
- Publication: Magliacano A, Scarano G, Fasano C, Mannini A, Liuzzi P, Finocchi A, Estraneo A, & Blinking in DoC Study Group. Spontaneous eye blinking as a diagnostic and prognostic marker in disorders of consciousness: Protocol of an international multicentre longitudinal study. NeuroRehabilitation. 2024. doi: 10.3233/NRE-240127.
Additional Signs of Consciousness
- Lead: Dr Olivia Gosseries
- To develop and validate a scale assessing potential new signs of consciousness not currently included in established clinical guidelines.
- Publication: Ongoing project.
International Survey on Speech-Language Therapy Practices
- Lead: Dr Charlène Aubinet
- To identify current tools and clinical practices used by speech-language therapists for the assessment and management of language, communication, and swallowing disorders in patients with DoC.
- Publication: Manuscript under review.
Adaptation and Validation of the Brief Evaluation of Receptive Aphasia (BERA)
- Lead: Dr Charlène Aubinet
- To translate, adapt, and validate the BERA in multiple languages for the assessment of receptive language abilities, including in patients with DoC.
- Publication: Aubinet C, Regnier A, Gillet A, Fritz P, Lejeune N, Jedidi H, Ledoux D, Majerus S, Gosseries O.Assessing receptive aphasia in patients after coma: Validation of the Brief Evaluation of Receptive Aphasia (BERA).Ann Phys Rehabil Med. 2026 May;69(4):102121. doi: 10.1016/j.rehab.2026.102121.
EEG for Detecting Covert Cognition: A Multicenter Study
- Lead: Dr Liliana Teixeira
- To assess the potential of EEG to detect covert awareness and predict prognosis in patients with DoC.
- Publication: Ongoing project.
Anoxic Patients with DoC
- Lead: Dr Anna Estraneo
- To evaluate the occurrence, long-term clinical evolution, and potential clinical and EEG predictors of outcome in patients with prolonged or chronic DoC of anoxic etiology.
- Publication: Ongoing project.
Treatment subgroup
CLOSED PROJECTS
Epilepsy in Disorders of Consciousness – Literature Review
- Lead: Dr Nicolas Lejeune
- This project reviewed the prevalence and clinical relevance of epileptic activity in prolonged disorders of consciousness, as well as its potential impact on recovery and treatment.
- Publication: Lejeune N, Zasler N, Formisano R, Estraneo A, Bodart O, Magee WL, Thibaut A. Epilepsy in prolonged disorders of consciousness: a systematic review. Brain Inj. 2021 Nov 10;35(12-13):1485-1495.
- https://doi.org/10.1080/02699052.2021.1973104
Epilepsy Management in DoC – International Survey
- Lead: Dr Marie-Michele Briand
- An international survey describing current clinical practices in the assessment and management of epilepsy in patients with DoC.
- Publication: Briand MM, Lejeune N, Zasler N, Formisano R, Bodart O, Estraneo A, Magee WL, Thibaut A. Management of Epileptic Seizures in Disorders of Consciousness: An International Survey. Front Neurol. 2022 Jan 11;12:799579.
- https://doi.org/10.3389/fneur.2021.799579
Multi-centre tDCS Trial
- Lead: Dr Aurore Thibaut
- A multicentre clinical trial evaluating the effects of transcranial direct current stimulation (tDCS) on recovery in prolonged DoC.
- Publication: Thibaut A, Fregni F, Estraneo A, et al. Sham-controlled randomized multicentre trial of transcranial direct current stimulation for prolonged disorders of consciousness. Eur J Neurol. 2023;30:3016-3031.
- https://onlinelibrary.wiley.com/doi/10.1111/ene.15974
End-of-Life Decision-Making in DoC
- Lead: Dr Benedetta Cecconi
- A survey examining clinical perspectives on decisions regarding continuation or withdrawal of life-sustaining treatments in DoC.
Multisensory Stimulation Study
- Lead: Dr Vic Veeramuthu
- A multicentre study exploring the effects of personalised multisensory stimulation on behavioural outcomes and brain connectivity in DoC.
ONGOING PROJECTS
International Survey on Treatment Practices
- Leads: Drs Maurer-Karattup and Ann-Marie Morrissey
- This project investigates the availability, organisation, and use of treatment approaches for individuals with DoC across countries.
Pain Assessment and Management in DoC
- Leads: Dr Estelle Bonin and Dr Liliana Teixeira
- A survey addressing current knowledge and clinical practices related to pain assessment and management in DoC, including perspectives from clinicians and families.
Music-Based Interventions
- Lead: Dr Caroline Schnakers
- A study evaluating the effects of auditory stimulation on responsiveness and arousal in patients with DoC.
Family Task Force
- Leads: Dr Caroline Schnakers and Dr Brooke Murtaugh
- An initiative aimed at improving communication between clinicians, researchers, and families, and facilitating access to educational resources and support networks. Identification of a list of expert DOC centers/programs (led by Dr Simona Ferioli).
Motor Disorders Task Force
- Lead: Dr Aurore Thibaut
- Ongoing work examining the prevalence, assessment, and management of motor disorders in DoC through collaborative research initiatives.
Meaningful Recovery in DoC
- Lead: Dr Martin Monti
- This project aims to better define clinically meaningful changes in recovery in DoC.
Facial Stimulation Project
- Co-Leads: Dr Liliana Teixeira, Dr Simona Abagnale
- An exploratory project investigating the potential role of facial stimulation in modulating responsiveness in DoC.
Venous Thrombosis Prophylaxis in DoC
- Lead: Dr Alice Barra
- A project aiming to inform clinical practice regarding thrombosis prevention in DoC through a structured, multi-phase approach.