BronQ Family Questionnaire |
BronQ Family: Assessing the long-term Impact of Bronchopulmonary Dysplasia (BPD) on affected Families' Health-related Quality of life
Dear parent, dear caregiver,
Thank you for your interest in the study “BronQ Family: Assessing the long-term Impact of Bronchopulmonary Dysplasia (BPD) on affected Families' Health-related Quality of life”. This study looks at how Bronchopulmonary Dysplasia (BPD) can affect children and especially their families in the long-term across several regions in Europe (Germany, France, Italy, the Netherlands, Spain, the United Kingdom (UK) including Northern Ireland) and the United States (US).
We invite you to participate in this survey if you are a parent or primary caregiver of a child who…
Dear parent, dear caregiver,
Thank you for your interest in the study “BronQ Family: Assessing the long-term Impact of Bronchopulmonary Dysplasia (BPD) on affected Families' Health-related Quality of life”. This study looks at how Bronchopulmonary Dysplasia (BPD) can affect children and especially their families in the long-term across several regions in Europe (Germany, France, Italy, the Netherlands, Spain, the United Kingdom (UK) including Northern Ireland) and the United States (US).
We invite you to participate in this survey if you are a parent or primary caregiver of a child who…
- … was born preterm (before 37 weeks of pregnancy), regardless of whether they have been formally diagnosed with BPD/experienced respiratory/lung problems,
- … has been discharged from their initial hospital stay after birth,
- … is currently under 18 years old,
- … was born or lives in France, Germany, Italy, the Netherlands, Spain, the UK (incl. Northern Ireland), or the US.
Some children born early may develop long-term breathing difficulties, often called "chronic lung disease of prematurity" or medically referred to as Bronchopulmonary Dysplasia (BPD). We are interested in hearing from all families of preterm-born children. By comparing the experiences of families with children who have BPD/respiratory or lung problems with those who do not, we aim to better understand the full picture: which challenges are specifically related to BPD, and how they differ from the broader experiences of families with preterm-born children in general. For more information, please visit our project website.
Completion takes about 30 minutes of your valued time. We know that this is a very sensitive topic. If any of the questions make you feel uncomfortable or upset, it’s okay to skip them or stop the survey at any time.
Ethics and data use: The Global Foundation for the Care of Newborn Infants (GFCNI) handles your data confidentially and in accordance with the General Data Protection Regulation (GDPR). Survey responses are collected using SurveyMonkey, a GDPR-compliant platform. Data is initially pseudonymized (e.g. via technical identifiers) and then fully anonymized before analysis. After anonymization, the data can no longer be linked to individuals and is no longer subject to the GDPR. All results are processed in aggregated form and used for scientific publications, policy development, and advocacy. The data will not be shared with third parties or used for any other purpose. The Ethics Committee of Maastricht UMC+ has waived the need for formal ethical approval. For more information, please visit our data protection page.
This research is carried out by the Scientific Affairs and Research Department of GFCNI (www.gfcni.org) and covers seven countries: France, Germany, Italy, the Netherlands, Spain, the UK (including Northern Ireland) and the US. For this study, GFCNI collaborates with representatives of parent organisations, ESPR (European Society for Paediatric Research), UENPS (Union of European Neonatal & Perinatal Societies) and European Respiratory Society (ERS).
GFCNI received a research grant from the pharmaceutical company Chiesi in support of this independent study. However, this project is fully coordinated by GFCNI including data collection, storage, analysis and reporting and Chiesi has no access to your details or any non-anonymized data.
If you have any questions, comments or concerns regarding the study please contact: research@gfcni.org
Thank you for your participation and support!
Global Foundation for the Care of Newborn Infants (GFCNI)
| With this survey, we hope to learn from your personal experiences – how early health issues affect the child and your family’s daily life and wellbeing over time. Your support will help raise awareness among healthcare professionals, patient advocates, policymakers, and the general public and improve care for other families in the future. |
Completion takes about 30 minutes of your valued time. We know that this is a very sensitive topic. If any of the questions make you feel uncomfortable or upset, it’s okay to skip them or stop the survey at any time.
Ethics and data use: The Global Foundation for the Care of Newborn Infants (GFCNI) handles your data confidentially and in accordance with the General Data Protection Regulation (GDPR). Survey responses are collected using SurveyMonkey, a GDPR-compliant platform. Data is initially pseudonymized (e.g. via technical identifiers) and then fully anonymized before analysis. After anonymization, the data can no longer be linked to individuals and is no longer subject to the GDPR. All results are processed in aggregated form and used for scientific publications, policy development, and advocacy. The data will not be shared with third parties or used for any other purpose. The Ethics Committee of Maastricht UMC+ has waived the need for formal ethical approval. For more information, please visit our data protection page.
This research is carried out by the Scientific Affairs and Research Department of GFCNI (www.gfcni.org) and covers seven countries: France, Germany, Italy, the Netherlands, Spain, the UK (including Northern Ireland) and the US. For this study, GFCNI collaborates with representatives of parent organisations, ESPR (European Society for Paediatric Research), UENPS (Union of European Neonatal & Perinatal Societies) and European Respiratory Society (ERS).
GFCNI received a research grant from the pharmaceutical company Chiesi in support of this independent study. However, this project is fully coordinated by GFCNI including data collection, storage, analysis and reporting and Chiesi has no access to your details or any non-anonymized data.
If you have any questions, comments or concerns regarding the study please contact: research@gfcni.org
Thank you for your participation and support!
Global Foundation for the Care of Newborn Infants (GFCNI)