Multicenter HomeVENT: Home Values and Experiences Navigation Track (NCT06102330)
๐ฉบ Plain-English Summary (8th-Grade Level)
This is a multicenter study to test a decision-making support process for families and clinicians facing decisions about chronic home ventilation for a child. The investigators hypothesize that the intervention will increase family preparedness for decision-making and will improve clinician-family shared-decision making. Half of families will be assigned to "usual care" arm and half to the "intervention" arm. Intervention families will view the study website with study staff and will answer questions related to website content. All families will be interviewed and surveyed at 1, 6 and 12 months after enrollment. Each family will designate 1-2 physician involved in the decision about home ventilation; each physician will be interviewed and surveyed at 1 month.
Who can join: To join this study, participants generally need to meet the listed inclusion criteria (6 items) and avoid the listed exclusions (3 items).
Location: Johns Hopkins All Childrens Hospital โ Tampa, Florida
๐ "Do I Qualify?" โ 1-Minute Self Screener
Instant ChecklistCheck every box below. If you can check all of them, you may meet the study's basic screening requirements (final eligibility is confirmed by the site team).
Usually NOT eligible if any of the following apply:
- Exclusion Criteria:
- Excluding children as they cannot be legal decision-makers
- Non-English or Non-Spanish speaking parents, as the intervention website/ videos are only available in those two languages.
๐ Extracted verbatim from the official NIH eligibility criteria. Always confirm with the study coordinator.
๐ All Participating Trial Locations (4 Sites)
- Johns Hopkins All Childrens Hospital โ Tampa, Florida
- Children's Hospital New Orleans โ New Orleans, Louisiana
- Johns Hopkins University School of Medicine โ Baltimore, Maryland
- Seattle Childrens Hospital โ Seattle, Washington
๐ฐ Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA ยง 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.