[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100603274":3},{"organization":4,"armGroups":7,"interventions":18,"overallOfficials":23,"centralContacts":28,"locations":36,"responsibleParty":53,"collaborators":55,"id":63,"slug":64,"hasResults":65,"nctId":66,"briefTitle":67,"officialTitle":68,"acronym":69,"eligibilityCriteria":70,"healthyVolunteers":71,"sex":72,"minAge":73,"maxAge":74,"enrollmentInfo":75,"targetDuration":10,"studyType":78,"phases":10,"briefSummary":79,"conditions":80,"keywords":84,"overallStatus":38,"whyStopped":10,"lastUpdateSubmitDate":115,"lastUpdatePostDateStruct":116,"startDateStruct":119,"completionDateStruct":121,"leadSponsor":123,"locationsCount":124},{"fullName":5,"class":6},"Global Foundation for the Care of Newborn Infants","OTHER",[8,14],{"label":9,"type":10,"description":11,"interventionNames":12},"Parents or caregivers of children with (a history of) physician diagnosed BPD",null,"The primary population of this study consists of parents and caregivers of preterm born children (\\\u003C 37 weeks of gestation) under 18 years old who have been diagnosed with newborn-onset Bronchopulmonary Dysplasia (BPD). Furthermore, the child should have been discharged from their initial hospital stay after birth. Participants will be recruited from multiple countries, including France, Germany, Italy, the Netherlands, Spain, the United Kingdom (including Northern Ireland), and the United States.",[13],"Other: N\u002FA, no intervention, participation in survey",{"label":15,"type":10,"description":16,"interventionNames":17},"Parents or caregivers of preterm born children without chronic health conditions","The control group consists of parents and caregivers of preterm born children (\\\u003C 37 weeks of gestation) under 18 years old who do not report a history of BPD. Furthermore, the child should have been discharged from their initial hospital stay after birth. They will as well be recruited from France, Germany, Italy, the Netherlands, Spain, the United Kingdom (including Northern Ireland), and the United States. If the final sample size permits, a post hoc filter will be applied to restrict analyses to the subgroup of very preterm (\\\u003C 32 weeks gestation) and\u002For very low birthweight (\\\u003C 1500 g birthweight) children.",[13],[19],{"type":6,"name":20,"description":21,"armGroupLabels":22,"otherNames":10},"N\u002FA, 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.",[9,15],[24],{"name":25,"affiliation":26,"role":27},"Julia Feiler, Dr","Global Foundation for the Care of Newborn Infants (GFCNI)","PRINCIPAL_INVESTIGATOR",[29,34],{"name":30,"role":31,"phone":32,"phoneExt":10,"email":33},"Christina Tischer, Dr","CONTACT","+49 (0)89 \u002F 89083260","research@efcni.org",{"name":25,"role":31,"phone":10,"phoneExt":10,"email":35},"Julia.feiler@gfcni.org",[37],{"facility":26,"status":38,"city":39,"state":40,"zip":41,"country":42,"countryCode":43,"cosmosGeoPoint":44,"geoPoint":49,"contacts":50},"RECRUITING","München","Bavaria","81379","Germany","DE",{"type":45,"coordinates":46},"Point",[47,48],13.46314,48.69668,{"lat":48,"lon":47},[51],{"name":30,"role":31,"phone":32,"phoneExt":10,"email":52},"christina.tischer@gfcni.org",{"type":54,"investigatorFullName":10,"investigatorTitle":10,"investigatorAffiliation":10,"oldNameTitle":10,"oldOrganization":10},"SPONSOR",[56,59,61],{"name":57,"class":58},"European Society for Paediatric Research (ESPR)","UNKNOWN",{"name":60,"class":58},"Union of European Neonatal and Perinatal Societies (UENPS)",{"name":62,"class":58},"European Respiratory Society (ERS)","100603274","long-term-burden-of-bpd-and-health-related-quality-of-life-bronq-family-100603274",false,"NCT07134387","Long-Term Burden of BPD and Health-Related Quality of Life (BronQ Family)","BronQ Family: Assessing the Long-term Impact of Bronchopulmonary Dysplasia (BPD) on Affected Families' Health-related Quality of Life","BronQ Family","Inclusion Criteria:\n\nBPD-group:\n\n* Being a parent or primary caregiver of a child until the age of 18 years (0 to under 18 years),\n\n  * who was born preterm (before 37 weeks of gestation),\n  * who has been discharged from their initial hospital stay after birth,\n  * who suffered from BPD in the newborn period and\n  * 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\n* providing sufficient proficiency in one of the languages of the questionnaire\n\nControl group:\n\n* Being a parent or primary caregiver of a child until the age of 18 years (0 to under 18 years),\n\n  * who was born preterm (before 37 weeks of gestation),\n  * who has been discharged from their initial hospital stay after birth,\n  * who did not suffer from BPD in the newborn period and\n  * 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\n* providing sufficient proficiency in one of the languages of the questionnaire\n\nExclusion Criteria:\n\nBPD-group:\n\n* Other family members than parents\u002Fprimary caregivers\n* Parents or primary caregivers\n\n  * of a child older\u002Fequal than 18 years of age\n  * of a child with BPD who has not been discharged yet\n  * of a child without a BPD in the newborn period\n  * with insufficient proficiency in one of the languages available in the questionnaire\n\nControl group:\n\n* Other family members than parents\u002Fprimary caregivers\n* Parents or primary caregivers\n\n  * of children older\u002Fequal than 18 years of age\n  * of a child born term\n  * of a child without BPD who has not been discharged yet\n  * with insufficient proficiency in one of the languages available in the questionnaire",true,"ALL","0 Years","18 Years",{"count":76,"type":77},480,"ESTIMATED","OBSERVATIONAL","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 (\\\u003C 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.",[81,82,83],"Bronchopulmonary Dysplasia (BPD)","Chronic Lung Disease of Newborn","HRQOL (Health Related Quality Of Life)",[85,86,87,88,89,90,91,81,92,93,94,95,96,97,98,99,100,101,102,103,104,105,106,107,108,109,110,111,112,113,114],"Parental Quality of life","QoL","Health-related quality of life","HRQoL","Caregiver burden","Parental well-being","Family","Chronic Lung Disease (CLD)","Chronic Lung Diseaseof Newborn","Respiratory Morbidity","Long-term outcomes","Parents","Caregivers","Infants","Newborn","Children","Preterm","Prematurity","NICU","Intensive Care","Neonatal","Survey","Questionnaire","Multinational study","retrospective data collection","participatory research","Patient-reported outcomes","PROs","Patient-reported outcome measures","PROMs","2025-11-18",{"date":117,"type":118},"2025-11-21","ACTUAL",{"date":120,"type":118},"2025-09-16",{"date":122,"type":77},"2027-01",{"name":5,"class":6},1]