Long-Term Burden of BPD and Health-Related Quality of Life (BronQ Family)

Recruiting now

Conditions studied: Bronchopulmonary Dysplasia (BPD), Chronic Lung Disease of Newborn, HRQOL (Health Related Quality Of Life)

In brief

The objective of this study is to examine the long-term impact of having a child with Bronchopulmonary Dysplasia (BPD) on the parents and caregivers from the time of diagnosis through adulthood. The primary focus will be on parents and caregivers of children until the age of 18 (\< 18) years who were diagnosed with BPD as newborns. Data will be collected through an online questionnaire in France, Germany, Italy, the Netherlands, Spain, the United Kingdom (including Northern Ireland), and the United States. It will ask about inclusion and exclusion criteria, background information (caregiver, child, and family situation), the child's medical situation, parental health-related quality of life (HRQoL), health literacy, feelings, support structures, and economic burden of the family.

Key facts

Study ID: NCT07134387
Run by: Global Foundation for the Care of Newborn Infants
People needed: 480
Starts: 2025-09-16
Expected to finish: 2027-01-01
Last updated by the study team: 2025-11-21

Who can join

Age: any, up to 18. Sex: any. Healthy volunteers: accepted.

You may qualify if…

BPD-group:
Being a parent or primary caregiver of a child until the age of 18 years (0 to under 18 years),
who was born preterm (before 37 weeks of gestation),
who has been discharged from their initial hospital stay after birth,
who suffered from BPD in the newborn period and
who was born or is currently living in the following countries: France, Germany, Italy, the Netherlands, Spain, the United Kingdom (including Northern Ireland) and the United States
providing sufficient proficiency in one of the languages of the questionnaire
Control group:
Being a parent or primary caregiver of a child until the age of 18 years (0 to under 18 years),
who was born preterm (before 37 weeks of gestation),
who has been discharged from their initial hospital stay after birth,
who did not suffer from BPD in the newborn period and
who was born or is currently living in the following countries: France, Germany, Italy, the Netherlands, Spain, the United Kingdom (including Northern Ireland) and the United States
providing sufficient proficiency in one of the languages of the questionnaire

You may not qualify if…

BPD-group:
Other family members than parents/primary caregivers
Parents or primary caregivers
of a child older/equal than 18 years of age
of a child with BPD who has not been discharged yet
of a child without a BPD in the newborn period
with insufficient proficiency in one of the languages available in the questionnaire
Control group:
Other family members than parents/primary caregivers
Parents or primary caregivers
of children older/equal than 18 years of age
of a child born term
of a child without BPD who has not been discharged yet
with insufficient proficiency in one of the languages available in the questionnaire

Where it is running

Global Foundation for the Care of Newborn Infants (GFCNI) — München, Bavaria, Germany (enrolling)

Full record on ClinicalTrials.gov

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