Role of project 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

A. Closed projects

1. International Survey on diagnostic and prognostic procedures for adult population (led by Drs Rita Formisano and Anna Estraneo)
Aim. To compare diagnostic and prognostic procedures for adults population 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.

2. International Survey on diagnostic and prognostic procedures for paediatric population (led by Drs Erika Molteni and Beth Slomine).
Aims. 1. to investigate diagnostic and prognostic procedures routinely used by international professionals to assess children with DoC; 2. to explore use and availability of internal and national guidelines for pediatric DoC; 3. to identify international differences in diagnostic/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

3. Covert cognition Task Force (led by Dr Caroline Schnakers)|
Aim. Covert cognition in patients with DoC represents a real diagnostic conundrum for clinicians. This meta-analysis aimed to identify demographic variables that are more likely to be associated with responding an active paradigm.

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.

4. Multi-center longitudinal study on prolonged DoC (led by Dr Anna Estraneo)
Aim. This international longitudinal multicenter study aimed to identify clinical findings and neurophysiological patterns (easy to be recorded in daily practice) with high prognostic value for short (6 months), long (12 months) and very long (24 months)-term clinical outcome.

Publications.
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):e1488-e1499. 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.

5. Visual pursuit and fixation in DoC: Delphi study (led by Dr Berno Overbeek)
Aim. This study aimed to develop a consensus on the operational definition and assessment of visual pursuit and visual fixation in patients with DoC by means of 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.

6. What are the names for covert cognition? (led by Dr Caroline Schnakers)
Aim. To perform a review of the literature to understand how the entity has been named through the years, to understand the rationale under each of these names and to 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. eCollection 2022.

B. Ongoing projects

1. Scoping review on diagnostic/prognostic procedures in paediatric DoC (led by Drs Erika Molteni and Beth Slomine).
Aim. To review the existing literature on neurobehavioral tools and MRI for the diagnosis and prognosis of pediatric patients with DOC

2. American and European Guidelines on Disorders of Consciousness. A follow-up from clinicians (led by Dr Michele Farisco).
Aim. To set up a survey (questionnaire) starting from the main recommendations and underlying 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.

3. Pain Assessment Project (led by Dr Rita Formisano)
Aim. To compare behavioral response to customized (selected from caregiver reports) versus standard pain stimuli (i.e. fingernail bed pressure). The behavioral responses assessed by the NCS-R will be recorded and compared with each other and correlated to CRS-R scores.

4. Phone outcome measures for DoC (led by Dr Olivia Gosseries)
Aim. This international multicenter study aimed at validating a new phone outcome questionnaire based on the CRS-R that is completed by non-professional caregivers for monitoring clinical evolution of patients with DoC.

5. Behavioral checklist to facilitate DOC assessments (led by Kristen Keech)
Aim. Problem: Inconsistencies in clinician approach to facilitating arousal and administering neurobehavioral assessments results in misdiagnosis, inaccurate prognostication, and decreased access to necessary rehabilitative services. Therefore, there is an immediate need to minimize the gap between monumental advances in current evidence and implementation of that evidence into clinical practice when caring for individuals with Disorders of Consciousness. Project Plan/Objective: The aim of this project is to gather a group of researchers and interprofessional clinicians to brainstorm, develop and explore the feasibility of an evidence-based bedside neurobehavioral checklist. The goal of the checklist would be to minimize inconsistences in evaluation, set the patient up for success with regard to individual and environmental factors, and reduce examiner bias when caring for individuals with DoC across the continuum of care.

6. Family Taskforce (led by Dr Caroline Schnakers)
Aim. Clinical research on disorders of consciousness (DOC) is meant to improve care of patients with DOC. However, there exists a gap between the knowledge accumulated by experts and what is known by families and caregivers. There is a real difficulty in knowing how to fill this gap and reaching efficiently caregivers. This project aims at: 1) identifying strategies to create a bridge between scientists, clinicians and caregivers using a) survey that will be sent to brain injury professionals and foundations, b) focus group with selected families of DOC patients; 2) collecting existing international educational material on DOC for families in order to make them available on the IBIA website.

7. Is EEG useful as a prognostic tool for patients with covert awareness? (Led by Dr. Liliana Teixeira)
Aim. to evaluate the potential of electroencephalography (EEG) as a prognostic biomarker in patients with disorders of consciousness. The research begins with a systematic review of existing evidence, followed by a multicentric longitudinal study designed to assess whether EEG-based detection of covert awareness is associated with long-term clinical outcomes. Findings from this study may contribute to improved prognostic accuracy and inform more tailored approaches to care and rehabilitation of this population.

Treatment subgroup

COMPLETED PROJECTS

Epilepsy in Disorders of Consciousness – Literature Review

Epilepsy Management in DoC – International Survey

Multi-centre tDCS Trial

End-of-Life Decision-Making in DoC

Multisensory Stimulation Study

ONGOING PROJECTS

International Survey on Treatment Practices

Pain Assessment and Management in DoC

Music-Based Interventions

Family Task Force

Motor Disorders Task Force

Meaningful Recovery in DoC

Facial Stimulation Project

Venous Thrombosis Prophylaxis in DoC