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

NCT07134387 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 480

Last updated 2025-11-21

No results posted yet for this study

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 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.

Conditions

  • Bronchopulmonary Dysplasia (BPD)
  • Chronic Lung Disease of Newborn
  • HRQOL (Health Related Quality Of Life)

Interventions

OTHER

N/A, no intervention, participation in survey

A unified questionnaire will be utilized for all participants, irrespective of their group assignment. Participants will be assigned to the BPD or comparison group retrospectively, based on their answers defining the BPD-status. To enhance comprehension, the questionnaire avoids using the term "BPD" wherever feasible and instead employs a more general reference to lung problems.

Sponsors & Collaborators

  • European Society for Paediatric Research (ESPR)

    collaborator UNKNOWN

  • Union of European Neonatal and Perinatal Societies (UENPS)

    collaborator UNKNOWN

  • European Respiratory Society (ERS)

    collaborator UNKNOWN

  • Global Foundation for the Care of Newborn Infants

    lead OTHER

Principal Investigators

  • Julia Feiler, Dr · Global Foundation for the Care of Newborn Infants (GFCNI)

Eligibility

Min Age
0 Years
Max Age
18 Years
Sex
ALL
Healthy Volunteers
Yes

Timeline & Regulatory

Start
2025-09-16
Primary Completion
2026-02-28
Completion
2027-01-31

Countries

  • Germany

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT07134387 on ClinicalTrials.gov