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Multicenter HomeVENT: Home Values and Experiences Navigation Track

Who can join

Ages 18 and older · All sexes · Healthy volunteers welcome

Inclusion Criteria:

1. English- or Spanish-speaking
2. Males and females; Age 18 and over.
3. Parent of a child facing a decision about home ventilation within 30 days. A "parent" will be defined as any self-identified primary caregiver (parents, grandparents, etc).

   or Physician of a child whose parents are enrolled in the study; physician must be engaged in the home ventilation decision.
4. Provision of signed and dated informed consent form (parent) or completion of oral consent (physician)
5. Stated willingness to comply with all study procedures and availability for the duration of the study
6. Access to necessary resources if choose to participate via internet or telephone

Exclusion Criteria:

1. Excluding children as they cannot be legal decision-makers
2. Non-English or Non-Spanish speaking parents, as the intervention website/ videos are only available in those two languages.

About the study

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.

What is being tested

• HomeVENT decision support tool (other)

Sponsor: Johns Hopkins University · Participants: 600 · Started: Feb 6, 2024

Contact the study team

• Renee D Boss, MD · Phone: 4106146444
• Fiona Jardine, RN · Phone: 410-955-5232

Official record on ClinicalTrials.gov — NCT06102330

Locations in the U.S.

Conditions

• Acute Lymphoblastic Leukemia
• Respiratory Failure

From ClinicalTrials.gov, data retrieved Sep 29, 2026. Each study sets its own eligibility; the study team decides who can join.