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Structured Family Deliberation for Chronic Respiratory Failure

N/A
Waitlist Available
Led By Nicholas A Jabre, MD
Research Sponsored by Johns Hopkins All Children's Hospital
Eligibility Criteria Checklist
Specific guidelines that determine who can or cannot participate in a clinical trial
Must have
Be older than 18 years old
Timeline
Screening 3 weeks
Treatment Varies
Follow Up duration of study period (12 months)
Awards & highlights

Summary

This trial tests guided family discussions with an online tool to help families with children in intensive care make decisions about long-term ventilation. It aims to make them feel more prepared and less stressed.

Eligible Conditions
  • Chronic Respiratory Failure

Timeline

Screening ~ 3 weeks
Treatment ~ Varies
Follow Up ~duration of study period (12 months)
This trial's timeline: 3 weeks for screening, Varies for treatment, and duration of study period (12 months) for reporting.

Treatment Details

Study Objectives

Outcome measures can provide a clearer picture of what you can expect from a treatment.
Primary outcome measures
Feasibility as assessed by proportion of families enrolled
Feasibility as assessed by proportion of successfully completed interventions
Feasibility as assessed by time spent engaging with the website by parents
Secondary outcome measures
Factors in decision making as assessed by participants responses to qualitative interview questions
Parental stress and coping as assessed by participants responses to qualitative interview
Preparedness in decision making as assessed by Preparation for Decision-Making Scale
+1 more

Trial Design

2Treatment groups
Experimental Treatment
Active Control
Group I: InterventionExperimental Treatment1 Intervention
Intervention families will participate in the Structured Family Deliberation that includes a clinician-led review of a web-based decisional aid.
Group II: ControlActive Control1 Intervention
Control families will undergo the standard decisional process for home ventilation and will also review the web-based decisional aid independently.

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Who is running the clinical trial?

Johns Hopkins All Children's HospitalLead Sponsor
43 Previous Clinical Trials
5,007,539 Total Patients Enrolled
Nicholas A Jabre, MDPrincipal InvestigatorJohns Hopkins All Children's Hospital
~0 spots leftby Sep 2025
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