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BronQ Family is an international research project studying how Bronchopulmonary Dysplasia (BPD), also known as chronic lung disease of prematurity, affects children and their families over time.
To do so, we are inviting parents or caregivers of children born preterm (before 37 weeks of pregnancy) of both groups
to take part in an online questionnaire on families' quality of life.
We want to learn more about the challenges families face when a child is born preterm, and which experiences are specifically linked to BPD. Even if your child wasn’t diagnosed with BPD but had breathing difficulties, needed oxygen, or required ventilation after birth, your experience is highly valuable for this research.
Share Your Experience – Help Future Families
Who Can Take Part?
Get Involved
Share your story. Medical research depends on you to make a real difference.
Take part in the BronQ Family study by completing our online questionnaire (approx. 30 minutes), available in your local language.
Data Protection and Contact
Your data will be stored anonymously and according to the General Data Protection Regulation (GDPR) in Europe.
Questions? Contact us at: research(at)gfcni.org
Whether or not your child has been diagnosed with Bronchopulmonary Dysplasia (BPD)/ experienced respiratory or lung problems, your experience matters.
Bronchopulmonary Dysplasia (BPD), also known as (neonatal) chronic lung disease of prematurity, is one of the most common chronic lung conditions in preterm infants, especially those born before 32 weeks of gestation or weighing less than 3.3 pounds (1,500 grams).
Although medical advances have improved survival for very preterm babies, their lungs are often not fully developed at birth. Many need help breathing, such as oxygen or a ventilator, during their first months of life. While this support is essential, it can also affect how the lungs develop, leading to BPD.
Children with BPD may continue to experience breathing problems, frequent respiratory infections, or asthma-like symptoms as they grow older. But the impact is not limited to the child. Families may face increased stress, anxiety, and financial challenges due to ongoing medical appointments, specialist care, and potential hospital readmissions.
Despite the serious nature of BPD, its long-term effects are still under-researched. Most existing studies focus on the neonatal period and early childhood, looking at issues like lung function and neurodevelopmental delays. However, we still know too little about how BPD affects families during later childhood, adolescence, and early adulthood, especially when it comes to family dynamics, parental mental health, and the economic burden of care.
Understanding the long-term impact of BPD is key to improving follow-up care, developing targeted interventions, and shaping public health policies that ease the burden on both families and healthcare systems.
The BronQ Family project is designed as an international study aiming to understand how BPD in preterm born children impacts families over time. The study will run until approximately December 2026, with data collection taking place via an online survey from September 2025 to February 2026. Ensuring a broad geographical distribution, participants living in France, Germany, Italy, Spain, the Netherlands, the United Kingdom (including Northern Ireland), and the United States are enrolled in the study. The questionnaire takes about 30 minutes to complete and will be available in English, Dutch, French, German, Italian, and Spanish.
We invite parents and primary caregivers of children (from discharge of their initial hospital stay after birth from birth up to under 18 years) who were born preterm (before 37 weeks of pregnancy) – both those who have experienced BPD/respiratory or lung problems and those without a BPD diagnosis/ respiratory or lung problems – to take part in the survey.
By comparing these groups of preterm born children with and without lung problems, we aim to better understand the full picture: which challenges are specifically linked to BPD, and how they differ from the broader experiences of families with preterm children.
The project is a close collaboration with international experts and healthcare professionals, scientific advisors, healthcare societies, educational institutions, and parent organizations.
The main goal of our study is to understand how Bronchopulmonary Dysplasia (BPD) affects families over time. Key areas of focus include physical health, emotional well-being, social relationships, daily functioning, and the financial and medical challenges faced by families.
We aim to generate strong scientific evidence on the long-term effects of BPD on family quality of life as children grow into adolescence and adulthood. The results will help us to raise awareness among healthcare professionals, patient advocates, policymakers, the public, and future families.
Official Launch
A key milestone for our project: April marked the official launch of our multinational research initiative with the inaugural meeting of the Expert Study Group.
Our interdisciplinary team brings together neonatologists, pediatricians, researchers in the field of respiratory diseases and/or QoL, as well as parent and patient advocates to ensure that both scientific knowledge and lived experience shape the study’s design.
We sincerely thank everyone for their dedication and valuable contributions and look forward to the next steps. More insights and project milestones will follow – stay tuned!
BPD is a chronic lung condition that affects some babies born very early, especially those who needed help breathing after birth. These procedures are essential and lifesaving, but they can hurt the small lungs and cause long-term breathing problems.
Parents or primary caregivers of children under 18 years who were born preterm (before 37 weeks) and live in France, Germany, Italy, Spain, the Netherlands, the UK, or the US – no matter if the child has been diagnosed with a lung condition or not.
The person mainly responsible for the day-to-day care of the child.
Yes! All parents of preterm children under 18 can join and help us – whether or not the child has a lung condition. We value the experiences of all parents of children born preterm. By comparing results, we can better understand which challenges are specifically related to BPD.
About 30 minutes
English, Dutch, French, German, Italian, and Spanish
Your data is safe. It is stored anonymously and securely, following European data protection laws (GDPR).
Data collection runs from September 2025 to February 2026.
Your input helps us gain valuable insights on how BPD affects families’ quality of life. We aim to improve care, support, and policies for families of preterm children in the future.
We expect to finalize the results end of 2026. Check out the project’s website, follow the GFCNI social media accounts, submit to the GFCNI newsletter or contact the team.
The team of GFCNI is leading the BronQ Family project. Furthermore, an international team of researchers, doctors, and parent advocates is working together to study the long-term effects of BPD and improve support for families. Every participating country is represented by at least one parent (either from a parent organization or with personal experience caring for a child with BPD) and at least one medical expert. These groups help guide the project to make sure it stays relevant, respectful, and grounded in both science and lived experience. Please find further information in the sections “Project Team” and “Transparency”.
Find more information about Bronchopulmonary Dysplasia (BPD) and other possible complications of preterm or sick babies affecting the lung on the Neopedia website. Neopedia is a neonatal care encyclopedia with reliable, expert-reviewed information about preterm birth, hospitalization, and beyond.
Read more information about preventing Bronchopulmonary Dysplasia (BPD) and follow-up & continuing care in our European Standards for Care of Newborn Health.
The team of GFCNI is leading the BronQ Family project. To make sure the study reflects the real needs and experiences of families, it is conducted in close collaboration with renowned international experts, bringing together healthcare professionals, scientific advisors and parent/patient representatives. International and local partners in the respective countries support the project.
For further information, please contact: research(at)gfcni.org
The External Scientific Advisory Board (ESAB) supports with expert guidance on study design, data interpretation, and scientific quality.
ESAB Members:
The Project Expert Group (PEG) consists of leading clinicians, researchers, and parent advocates to include both scientific rigor and real-world family needs.
PEG Members:
Healthcare Societies:
Parent Organizations:
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[9] Peralta GP, Piatti R, Haile SR, Adams M, Bassler D, Moeller A, et al. Respiratory morbidity in preschool and school-age children born very preterm and its association with parents’ health-related quality of life and family functioning. Eur J Pediatr. 2023 Jan 6;182(3):1201–10 https://doi.org/10.1007/s00431-023-04829-0
[10] Feeley CA, Turner-Henson A, Christian BJ, Avis KT, Heaton K, Lozano D, et al. Sleep Quality, Stress, Caregiver Burden, and Quality Of Life in Maternal Caregivers of Young Children With Bronchopulmonary Dysplasia. J Pediatr Nurs Nurs Care Child Fam. 2014 Jan 1;29(1):29–38. https://doi.org/10.1016/j.pedn.2013.08.001
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[12] van Katwyk S, Augustine S, Thébaud B, Thavorn K. Lifetime patient outcomes and healthcare utilization for Bronchopulmonary dysplasia (BPD) and extreme preterm infants: a microsimulation study. BMC Pediatr. 2020 Mar 25;20(1):136. https://doi.org/10.1186/s12887-020-02037-5
[13] Berlin KEK, Scott W, Dawson S, Brousseau D, Lagatta JM. Health-Related Quality of Life for Parents of Infants with Bronchopulmonary Dysplasia. J Pediatr [Internet]. 2024 Jan 1 [cited 2025 Mar 7];264. Available from: https://www.jpeds.com/article/S0022-3476(23)00637-6/abstract
[14] Brady JM, Zhang H, Kirpalani H, DeMauro SB. Living with Severe Bronchopulmonary Dysplasia—Parental Views of Their Child’s Quality of Life. J Pediatr. 2019 Apr;207:117–22. https://doi.org/10.1016/j.jpeds.2018.10.001
GFCNI received a research grant from Chiesi in support of this independent study. All content was independently developed and verified by GFCNI and its scientific advisors.
GFCNI is the first global organization and network to unite patients, families, healthcare professionals,
medical staff, and scientists from different disciplines, fields,
and countries – all with the joint goal of advancing the health and quality of care for newborns and their families across the globe.
GFCNI is a non-profit organization established under German public law. Tax Reference Number: 143/235/22619
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