Understanding Ethical Concerns in Detecting Consciousness

This study is looking for patients who have participated in research using special brain technologies (neurotechnologies) to diagnose or predict recovery from disorders of consciousness (DoC) at Mass General Brigham. The goal is to understand the ethical concerns around using these new technologies to detect consciousness and predict recovery after a brain injury. You would share your preferences, expectations, and concerns about sharing uncertain diagnostic information through surveys and semi-structured interviews. The study aims to gather insights from patients, their families, and healthcare providers to develop an ethical way to use these new tools. The main way success is measured is by collecting and evaluating these surveys and interviews over about one year.

Study design
This is an observational study aiming to enroll 70 participants. It involves collecting information through surveys and interviews rather than testing a new treatment.
What's involved
You would participate in surveys and semi-structured interviews to share your preferences, expectations, and concerns. This would take place over an average of one year.
Compensation
Not stated in the trial record.
Follow-up
Your participation, including surveys and interviews, will be measured through study completion, which is an average of one year.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT05010265

An Ethical Approach to Detecting Covert Consciousness

Recruiting
Not specifiedAges 18+Observational
Massachusetts General Hospital
~70 participants
Updated 2025-09-11 on ClinicalTrials.gov
What's tested:Clinician QuestionnaireSemi Structured Interviews

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Surveys and semi-structured interviews
Measured over through study completion, an average of 1 year
Disorder of Consciousness

NCT05010265

Where you'd take part

This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • Massachusetts General Hospital

    Boston, Massachusettsstudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

  • Michael Young, MD · PRINCIPAL_INVESTIGATOR · Massachusetts General Hospital

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Eligibility criteria

Inclusion

Patients with prior or ongoing participation as subject in a research study using neurotechnologies for diagnosis and prognosis of disorders of consciousness (DoC) at Mass General Brigham
Patients capable of understanding and answering questions in English
Patients cble to provide informed consent
Patients for whom MRI / EEG are administered for clinical detection of consciousness and/or neuroprognostication
Family member or surrogate caregiver of patients who previously participated or are currently participating in a research study using neurotechnologies for diagnosis and prognosis of DoC at Mass General Brigham.
Family Members / Surrogates capable of understanding and answering questions in English
Family Members / Surrogates able to provide informed consent
Family member or surrogate caregiver of patients for whom MRI / EEG are administered for clinical detection of consciousness and/or neuroprognostication
Research Investigators involved with research responsibilities in designing or testing neurotechnologies on patients with DoC.
Clinicians with clinical responsibilities caring for patients in behaviorally unresponsive state, defined as coma, vegetative state (VS), and low-level minimally conscious state (MCS).
Selected leaders and advisors (Community and Thought Leaders) from brain injury associations and advocacy organizations, and policy-makers involved in decision-making impacting patients with DoC.
  • Surveys and semi-structured interviewsthrough study completion, an average of 1 year

    Capture and evaluate salient perspectives, preferences and values surrounding the use of advanced neurotechnologies to detect consciousness and predict recovery