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Disorders of Consciousness (DoC): enhancing the transfer of knowledge and professional skills on evidence-based interventions and validated technology for a better management of patients

Periodic Reporting for period 1 - DoCMA (Disorders of Consciousness (DoC): enhancing the transfer of knowledge and professional skills on evidence-based interventions and validated technology for a better management of patients)

Reporting period: 2018-01-01 to 2019-12-31

SUMMARY FOR PUBLICACION
1. Summary of the context and overall objectives of the project (For the final period, include the conclusions of the action)
This section should include information on:
What is the problem/issue being addressed?
Why is it important for society?
What are the overall objectives?
The overall goal of DOCMA is to enhance international research on Disorders of Consciousness (DoC) by strengthening the collaboration among project participants to leverage the shared scientific and expert know-how in the field.
The problem which DOCMA addresses is the difficult challenges of diagnosis and treatment and also lack of promising opportunities for fundamental scientific advancements about the nature of the human brain.
The overall objectives of the project are:
- Consolidating of a joint international scientific and innovation programme for developing a research project on DoC diagnosis, evaluation, and management of patients.
- Establishing a standardized methodology, common approach and data sharing resources to enable data access and research collaborations concerning DoC.
- Contribution to transfer knowledge and quality of life of the individuals, by generating new services, technologies and/or products to respond to the society need concerning DoC.
This project is important for the society because the health systems will offer better services for DoC, specifically better quality of life of service-users and/or patients with DoC.
During the first 24 months, several deliverables in management and ethics part, work package 1 and 6 respectively, has been uploaded. And the remaining deliverables are closed to be finished. Regarding scientific deliverables, the work has been focused on deliverables D2.1 and D2.2. The ethics requirements are mostly accomplished, and project management activities programmed for this year have been completed. They include the 2 face to face meetings, 12 online meetings, 35 researchers enrolled in the project, and 28 implemented so far with a duration of 50 months.
Under WP2, Diagnosis, assessment techniques and data collection for a better characterization and prognosis of DoC Patient, the main results achieved so far are:
- agreement among partners on the diagnosis and assessment methodologies to be used in the project
- definition of a protocol which will be used by all DoCMA partners to collect long term data from patients with DoC with the aim to define diagnostic and prognostic factors of DoC
- release of the first version of the DoCMA data-repository for gathering data acquired from DoC patients and thus sharing them among DoCMA partners
- data collection from 144 DoC patients at the end of the first period.
- A manuscript on predictors at 6-month follow-up is under the revision of a peer-reviewed scientific journal (Estraneo A. et al. Multi-center prospective study on predictors for short-term outcome in disorders of consciousness)
Under WP3, Research on treatment of in patients with DoC and Multicentral Controlled Clinical trial on tDCS desing and implementation, the main results achieved so far are:
- The Cochrane protocol for the second systematic review (T3.2) is accepted and will be published soon ( Krewer, C. & A. Thibaut; 2020). Non-invasive brain stimulation for the treatment of severe disorders of consciousness in people with acquired brain injury. Cochrane Protocol.
- In addition, the clinical trial was designed (T3.3) implemented (T3.4) and we enrolled 44 patients (see T3.6).
Under WP4, training, the main results achieved so far are:
- 52 conferences participation, 9 of which (17%) were related to training activities;
- 20 seminars, 19 (95%) of which were related to training activities;
- 17 workshops, 17 (100%) of which were related to training activities;
- 3 specialized workshops/training courses have been held by ERs during their secondment in the hosting institutions;
- 16 formalized training activities attended by seconded ESR staff during the secondment.
Under WP5, communication, dissemination and exploitation, the main results achieved so far were
- The huge number of active contributions of the whole consortium to conferences, workshops, and seminars related to DoCMA, see T5.2
- The setup and implementation of the first version of the communication plan, which is updated at regular intervals throughout the project.
- The setup and maintenance of the DoCMA webpage
- Planning for a common DoCMA-IBIA conference in the year 2020 conference has been initialized, which will provide a big impact on the dissemination and training work packages.
- A proposal submission under H2020-MSCA-ITN-2020 call.
The current state of art on the topic clearly determines three main challenges for future advancement on DoC research and clinical practice enhancement.
Challenge 1: Lack of standardized diagnosis guidelines of methodologies to homogenize the adequate identification of the different types of DC. The progress of DoCMA project during its firsts 24 months was focused on the contribution to the improvement of the research and training on DoC multimodal diagnosis techniques.
Challenge 2: Scarce literature and/or data on prognosis related of makers. The progress of DoCMA project during its firsts 24 months was focused on defining a common standardized procedure and timing for short and long-term patient assessment.
Challenge 3: Most of the treatment alternatives are not evidence-based and new therapeutic promising approaches (brain stimulation )need research. The progress of DoCMA project during its firsts 24 months was focused on compiling knowledge on DoC care management and recovery enhancement evidence-base results, sharing this knowledge and contributing to ESRs and ER training on the specific well-founded treatments alternatives. Also, the project has analyzed the data collection of longitudinal of individuals with DoC.
The socio-economic impact of the project is the better quality of life of service users and/or patients with DoC, besides impacts on current policies and health systems through the generation of policy recommendations and guidelines, as well and effective dissemination and networking strategy. Lastly, the economic impact is with enhancing a cost-efficiency for Public Health Administration and insurance companies: less costs associated with long-term care of DoC patients for public administration and for insurance companies for privatized health systems, more accurate prognosis on DoC diagnosis and its evolution overtime, more efficient pathways, estimation of costs and burdens for the public administration and a clearer and more accurate and adapted methodologies for measuring the socio-economic impact of research and clinical interventions on DoC
Review Meeting, Belgium, June 2019, consortium photo
Kick off meeting, Valencia, february 2018 consortium photo