Status:

RECRUITING

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

Lead Sponsor:

Global Foundation for the Care of Newborn Infants

Collaborating Sponsors:

European Society for Paediatric Research (ESPR)

Union of European Neonatal and Perinatal Societies (UENPS)

Conditions:

Bronchopulmonary Dysplasia (BPD)

Chronic Lung Disease of Newborn

Eligibility:

All Genders

Up to 18 years

Brief Summary

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 p...

Detailed Description

The study will be designed as an observational, cross-sectional survey with a comparison group using a self-administered, web-based questionnaire for retrospective data collection. The study will use ...

Eligibility Criteria

Inclusion

  • 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

Exclusion

  • 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

Key Trial Info

Start Date :

September 16 2025

Trial Type :

OBSERVATIONAL

Allocation :

ESTIMATED

End Date :

January 1 2027

Estimated Enrollment :

480 Patients enrolled

Trial Details

Trial ID

NCT07134387

Start Date

September 16 2025

End Date

January 1 2027

Last Update

November 21 2025

Active Locations (1)

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1

Global Foundation for the Care of Newborn Infants (GFCNI)

München, Bavaria, Germany, 81379