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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' quality of life over time.
Data collection was completed in February 2026, with 2,453 parents and caregivers participating across seven countries: France, Germany, Italy, the Netherlands, Spain, the United Kingdom, and the United States. We are currently analyzing the data and will update this project page as further publications and findings become available.
Read the BronQ Family Study Protocol
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.
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.
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.
Drawing on responses from 2,453 parents and primary caregivers across seven countries, BronQ Family provides a multinational perspective on the long-term impact of Bronchopulmonary Dysplasia (BPD) on families. Explore the scientific publications and outputs from the BronQ Family project.
Publication: The BronQ Family Study Protocol
The BronQ Family Study Protocol is published. It outlines the scientific foundation of the project:
This protocol serves as a comprehensive guide to the research methodology and stakeholder engagement strategy used throughout the project.
More to come: Further publications on the study findings are currently in preparation and will be added to this section as they become available. Follow GFCNI on social media or subscribe to the GFCNI newsletter to stay up to date on the latest project developments and publications.
Since its launch in April 2025, the BronQ Family team has actively participated in numerous national and international conferences, congresses and webinars. These events have provided valuable opportunities to:
Below is an overview of selected conferences and events where GFCNI and members of the BronQ Family team have presented and discussed the project.
In April 2025, the BronQ Family project was introduced to GFCNI’s corporate partners and international network of patient and parent organizations.
Dr. Julia Feiler emphasized the burden of Bronchopulmonary Dysplasia (BPD) for children and their families, and the need for scientific evidence on the long-term impact on quality-of-life.
In October 2025, Ilona Trautmannsberger presented the BronQ Family Study during the jENS poster walk in Belgrade, providing an overview of the study aims, design, and methodology and raising awareness of the multinational project.
BronQ Family provides an in-depth analysis of the long-term impact of BPD, considering respiratory health alongside quality of life, daily life, family functioning, and caregiver well-being.
In March 2026, the status quo of the BronQ Family project was presented to GFCNI’s corporate partners and international network of patient and parent organizations.
Ilona Trautmannsberger and Berit Zuna-Pawlik summarized the successful recruitment phase and gave a quick outlook on first impressions and next steps of analysis.
In May 2026, Ilona Trautmannsberger presented preliminary findings from the BronQ Family Study in her talk: “Living with BPD: The Long-Term Impact on Families.”
The early results suggest that the impact of Bronchopulmonary Dysplasia (BPD) extends far beyond respiratory morbidity alone. Families described long-term challenges in many areas of life, including emotional well-being, daily routines, finances, information, and support.
The presentation generated strong interest and positive feedback from the community, highlighting the relevance of examining the long-term impact of BPD from the perspective of children and families.
Meaningful research starts with meaningful partnerships. In July 2026, the BronQ Family project was part of the pre-congress webinar series introducing the European Respiratory Society (ERS) Congress theme: 'United for Better Breathing – Partnership between patients, clinicians and researchers'.
Dr. Christina Tischer and Dr. Sylvia Obermann presented the BronQ Family project as an example of meaningful co-creation in respiratory research. They highlighted that lived experience is essential knowledge and that parents and patients contribute perspectives that no one else can provide. Bringing together healthcare professionals, researchers, parents, and patients as equal partners helps shape research that is relevant and translates into actionable improvements in care.
'United for Better Breathing – Partnership between patients, clinicians and researchers'
In September 2026, Dr. Christina Tischer presented preliminary findings from the BronQ Family study at the European Respiratory Society Congress in Barcelona. Drawing on responses from 2,453 parents and primary caregivers across seven countries, the poster highlighted the long-term impact of bronchopulmonary dysplasia (BPD) on children and families, bringing these insights to the international respiratory research community.
The BronQ Family project was also featured as part of the Global Voices 2026 campaign in the ERS Global Village, showcasing the collaborative approach behind the project and the important role of parent representatives in shaping research.
“The first few years were full of worry about respiratory infections and being hospitalized again,” says Katarina Eglin, mother of a son who was born extremely preterm and diagnosed with Bronchopulmonary Dysplasia (BPD).
“The older sister was also severely restricted at home at the beginning, because meeting friends from kindergarten in the afternoon or at the weekend could only take place outside in order to better protect the youngest from potential infection in the home environment. In the early years, children's birthday parties always had to be celebrated at the grandparents' house.”
“It took a long time for us to believe that a cold in the youngest child could simply remain a cold. The emergency bag for hospital admission was always packed.”
Sophie Proud was born as the surviving twin at just 24 weeks and had a turbulent start in life. She spent 10 weeks on a ventilator, battled repeated infections, and needed oxygen support for the first 14 months. Her parents were told to keep her away from other children to protect her fragile lungs from further infections.
As she grew, the effects of her high-frequency ventilation, high pressures, long-term oxygen at home, and severe Bronchopulmonary Dysplasia (BPD) continued to shape her childhood. She couldn’t run or play like other kids. At age 7, her lung function was still only 65–70% of normal. “I just felt like I was missing out,” Sophie remembers.
But her story didn’t end there. Today, Sophie is an adult and a NICU nurse, caring for babies like she once was. Despite everything, her most recent tests show healthy lungs, and a total lung capacity of 98%.
“Our daughter was born extremely premature at just 26 weeks of gestation. From the very beginning, breathing was her biggest challenge,” says Maria Valls, mother of a now 5-year-old child, who was diagnosed with Bronchopulmonary Dysplasia (BPD). “She needed to be intubated and required respiratory support for a long time in the neonatal intensive care unit. Those were very hard and uncertain days, filled with machines, alarms, and constant fear.”
“After almost four months in the hospital, we were finally able to take her home – but not without oxygen support. For the first two months at home, she still needed oxygen 24/7. It was a time of joy because we were finally together as a family, but also of stress and anxiety, as we had to manage medical equipment and monitor her constantly.”
“Now, our daughter is five years old. She is doing well and lives a seemingly normal life. We go for yearly check-ups with the pulmonology team, but we still have so many unanswered questions. No one has ever clearly told us whether she will have long-term effects from the Bronchopulmonary Dysplasia (BPD) or not. As a family, this uncertainty stays with us. We constantly wonder: will she continue to thrive without any complications? Will she be able to live a completely normal life as she grows older?”
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 BPD and follow-up & continuing care in our European Standards for Care of Newborn Health.
April 2025: 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!
September 2025: The Questionnaire Is Now Live!
We are excited to share that the survey is now open! This marks another important milestone in our BronQ Family project. Now we hope for many families to take part in the study and share their experiences. Every response helps us better understand family life with a chronic lung disease after prematurity, and improve care and support in the future.
We sincerely thank everyone who contributed to making this possible! Together, let's spread the word and reach as many families as possible.
March 2026: Survey closed – Data Analysis Begins
We sincerely thank everyone who participated in the online questionnaire. The survey is now closed, and we were able to collect a substantial amount of valuable data. This marks another important milestone in the BronQ Family project.
We are now moving into the data analysis phase. Further insights and first results will be shared soon.
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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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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