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.

B. Ongoing projects

1. 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.

2. 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

3. 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.

4. 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.

5. 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.

6. 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.

7. 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.

Treatment subgroup

A. Closed projects

1. Guidelines for the Treatment of Epilepsy & Review of the Literature_Part 1: Review of Literature (led by Dr. Nicolas Lejeune)
Aim. The first aim of this review was to assess the occurrence of epilepsy and epileptic abnormalities (EA) in patients with prolonged DOC and to determine the influence of such abnormalities on recovery. The second aim was to review the influence of antiepileptic drugs (AED) and therapeutic interventions on seizure prevalence and consciousness recovery.

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. doi: 10.1080/02699052.2021.1973104.

2. Guidelines for the Treatment of Epilepsy & Review of the Literature_Part 2: Survey on the Management of Epilepsy in DOC Patients (led by Dr. Marie-Michele Briand)
Aim. Through a survey, we asked healthcare professionals who work with DOC patients about epilepsy disorders (ED). The goal of this project was to collect information about ED prophylaxis, diagnosis and treatment. In addition, we wanted to determine the impact of amantadine in the management of ED/EA and the impact of ED/EA on amantadine use.

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. doi: 10.3389/fneur.2021.799579.

B. Ongoing projects

1. Survey on Treatments across Countries (led by Drs. Maurer-Karattup and Ann-Marie Morrissey)
Aim. In this project, we were interested in assessing, using online surveys, the extent to which treatment facilities are available and what types of treatment approaches are actually being used in adults and children with DoC in the countries represented in the IBIA-DOC-SIG. Due to the complexity of the topic, the task was divided into two parts: Part 1: Structures of care, availability, duration and payment of treatment; Part 2: Therapies being implemented.

2. Multi-Center tDCS Study (led by Dr Aurore Thibaut)
Aim. The goal of this multi-center randomized controlled double-blind clinical trial is to test the effects of the application of tDCS (or sham) during four weeks on the short-term recovery (right after the 4 weeks of stimulation) and the long-term outcome (three-month follow-up) of patients in prolonged DoC.

3. Pain Management (led by Estelle Bonin)
Aim. The survey aims to assess the current state of knowledge of caregivers and families and what is currently being done in the clinical management of pain in DOCs. The survey will be sent to families and clinical teams to collect their opinion and knowledge on pain assessment and management in DOC patients. The purpose of this project is to better understand the needs and expectations of clinicians and families regarding this topic and by this way improve the assessment and clinical management of pain in this population.

4. End of life decisions (led by Benedetta Cecconi)
Aim. The questionnaire “END-OF-LIFE DECISION-MAKING FOR PATIENTS WITH DISORDERS OF CONSCIOUSNESS” aims to improve the understanding of decisions on the (dis)continuation of life-sustaining treatment for patients with DOC.

5. Music Therapy (led by Dr. Caroline Schnakers)
Aim. The objective of this project is to evaluate the effects of preferred music and binaural beats on DOC patient’s responsiveness and arousal. A pseudo-randomized controlled trial will be implemented. Behavioral evaluations and EEG will be collected to evaluate the effects of the respective interventions.

6. Treatment Efficacy of Personalised Multisensory Stimulation (MSS) in Improving Functional and Structural Connectivity in DoC : A NODDI/ resting state-fMRI Multi-Center Study (led by Dr. Vic Veeramuthu)
Aim. The primary goal of the study is to measure the efficacy of standardized administration of personalized multisensory stimulation (MSS) amongst adult patients with DoC over an 8-week period. The proposed imaging modality of choice to measure MSS-induced structural and functional connectivity changes are through rs-fMRI and NODDI, along with relevant behavioral outcome measures. We understand that some interested Centers might have limitations in terms of resources/ facilities for the advanced imaging investigations, and therefore an option to participate in the behavioral data component of the study (via MSS administration and behavioral outcome measures) is possible. Additionally, an online training on standardized MSS administration will be made available to interested parties.

7. Identification of a list of expert DOC centers/programs (led by Dr Simona Ferioli)
Aim. to identify expert DOC centers/programs internationally to develop a repertoire that would be available online and could be used by caregivers and families