Patient-Reported Outcomes to Understand Infant to Early Childhood Transition for Infants with Bronchopulmonary Dysplasia (Bpd)

Studying Transition Plans for Babies with Lung Condition

R
Rebecca Rose, MD

Primary Investigator

Enrolling By Invitation
31 weeks or below
All
Phase N/A
85 participants needed
1 Location

Brief description of study

For preterm infants with bronchopulmonary dysplasia (BPD), the transition home from the neonatal intensive care unit (NICU) profoundly impacts both children and their parents.  The goal of this study is to establish patient-reported measures that refine neonatal illness risk-stratification and identify barriers to post-discharge specialty care, in order to implement hospital-to-home transition strategies that reduce post-prematurity respiratory disease for infants with BPD.

THIS STUDY IS ENROLLING BY INVITATION ONLY - We will identify and screen eligible infants with BPD approaching NICU discharge, obtain informed consent from parents, and enroll subjects according to the approved protocol.

Detailed description of study

This is a prospective multisite study targeting a cohort of infants with BPD, where at least one primary caregiver (referred to as “parent”) can consent. Enrollment will occur between 36 weeks corrected age and when the infant is approaching discharge from the NICU. Parent-reported data will be collected from enrollment through 2 years corrected age by using questionnaires delivered by text or email via secured personalized links through REDCap. Data will be collected at 6 time points for each subject.

Subject follow-up will be completed via text message, e-mail or phone call by the parent. The lead site will check to make sure subjects are completing their follow-up when it is due. Follow-up will occur at:
1. 4-6 weeks post-discharge
2. 3-6 months post-discharge
3. 6-12 months post-discharge
4. 12-18 months corrected age
5. 18-24 months corrected age

Eligibility of study

You may be eligible for this study if you meet the following criteria:

  • Conditions: Bronchopulmonary Dysplasia (BPD), Riley
  • Age: 31 weeks or below
  • Gender: All

Inclusion Criteria for Infants
• Infants must be born • Infants must be admitted to NICU on or before 36 weeks corrected age.
• Infants must be diagnosed with BPD based on respiratory support at 36 weeks corrected age.
• Infants must be anticipating discharge from hospital to home.
• Infants with any respiratory support.

Exclusion Criteria for Infants
• Infants that are not discharged with a parent.
• Infants discharged on hospice or are expected to die within a year of discharge.
• Infants with major congenital anomalies or complications unrelated to prematurity.
• Infants who are discharged with a foster parent.

Inclusion Criteria for Parents
• Parents must be willing and able to consent.
• Parents must speak English or Spanish.

Exclusion Criteria for Parents
• Parents that speak a language other than English or Spanish.

This study investigates the transition from hospital to home for preterm infants with bronchopulmonary dysplasia (BPD). BPD is a lung condition that affects babies, particularly those born early. The purpose of this study is to understand how this transition affects both the infants and their parents, and to find ways to improve it.

Participants in the study will be infants with BPD and their parents. Parents will provide information through questionnaires sent by text or email. These questionnaires will be used to gather data from the time the infant is about to leave the hospital until they are two years old. The study will track the infants' progress at several points after they go home.

  • Who can participate: Infants must be born preterm and diagnosed with BPD. They should be nearing discharge to home. Parents must consent and speak English or Spanish.
  • Study details: Participating parents will complete questionnaires about their infants' health and development. These will be sent via text or email at specific times. The study aims to gather information to improve care strategies for infants with BPD.
Updated on 13 Jul 2026. Study ID: PNEO-MCW-BPD-PRO, 29132
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Interested in the study?

This study is accepting only persons who receive care at a certain clinic or doctor or who are part of an invited group. Questions about this study can be directed to the study team listed in the description or contact your doctor to see if you are eligible.

Accepting Referrals by Invitation Only