Long-term impact of BPD on parents and caregivers (BronQ Family)

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This is a cross-sectional observational survey using a retrospective, self-administered multilingual web questionnaire for parents and primary caregivers of preterm children. It compares caregivers of children who had BPD in the newborn period with caregivers of preterm children who did not have BPD. The questionnaire collects demographic and family background, the child's medical history, parental health-related quality of life, health literacy, emotional and social support, and economic burden. The project is developed and reviewed in partnership with parent organizations, clinical experts, and an external scientific advisory board to guide design, questionnaire content, and analysis.

Why it matters

Who can join: the full rules

Inclusion Criteria:

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 Criteria:

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's running

• Global Foundation for the Care of Newborn Infants (GFCNI)
  München, Bavaria, Germany Recruiting

Study contacts

• Principal investigator: Julia Feiler, Dr — Global Foundation for the Care of Newborn Infants (GFCNI)
• Study coordinator: Christina Tischer, Dr
• Email: research@efcni.org
• Phone: +49 (0)89 / 89083260

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.