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

Recruitingn/aAges 0 Years - 18 YearsAllGlobal Foundation for the Care of Newborn Infants
NCT07134387 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

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.

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📋 Eligibility rules (as published)
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
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What it tests

  • N/A, no intervention, participation in survey
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Where

1 site
Global Foundation for the Care of Newborn Infants (GFCNI)
München, Germany
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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