[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"leadSponsorName\":\"Global Foundation for the Care of Newborn Infants\",\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:":151},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,3,0,[8,74,122],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":14,"acronym":15,"eligibilityCriteria":16,"healthyVolunteers":17,"sex":18,"minAge":19,"maxAge":20,"enrollmentInfo":21,"targetDuration":4,"studyType":24,"phases":4,"briefSummary":25,"conditions":26,"keywords":30,"overallStatus":61,"whyStopped":4,"lastUpdateSubmitDate":62,"lastUpdatePostDateStruct":63,"startDateStruct":66,"completionDateStruct":68,"leadSponsor":70,"locationsCount":73},"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":22,"type":23},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.",[27,28,29],"Bronchopulmonary Dysplasia (BPD)","Chronic Lung Disease of Newborn","HRQOL (Health Related Quality Of Life)",[31,32,33,34,35,36,37,27,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60],"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","RECRUITING","2025-11-18",{"date":64,"type":65},"2025-11-21","ACTUAL",{"date":67,"type":65},"2025-09-16",{"date":69,"type":23},"2027-01",{"name":71,"class":72},"Global Foundation for the Care of Newborn Infants","OTHER",1,{"id":75,"slug":76,"hasResults":11,"nctId":77,"briefTitle":78,"officialTitle":79,"acronym":80,"eligibilityCriteria":81,"healthyVolunteers":17,"sex":18,"minAge":20,"maxAge":4,"enrollmentInfo":82,"targetDuration":4,"studyType":24,"phases":4,"briefSummary":84,"conditions":85,"keywords":96,"overallStatus":113,"whyStopped":4,"lastUpdateSubmitDate":114,"lastUpdatePostDateStruct":115,"startDateStruct":117,"completionDateStruct":119,"leadSponsor":121,"locationsCount":73},"100579648","global-survey-on-newborns-hospitalisation-and-parental-experiences---the-hope-study-100579648","NCT06827028","Global Survey on Newborns' HOspitalisation and Parental Experiences - the HOPE Study","Global Survey on Newborns' HOspitalisation and Parental Experiences","HOPE","Inclusion Criteria:\n\nParent or caregiver of a newborn infant born on January 1, 2023, or thereafter, who received\u002Fis receiving special\u002Fintensive care starting within the first week of life such as oxygen therapy or other respiratory support, incubator treatment, intravenous infusions, treatment of (suspected) sepsis, pneumonia, necrotising enterocolitis, malformations, jaundice, nutritional\u002Ffeeding problems, hypoglycemia, etc.\n\nExclusion Criteria:\n\n* Other family members than parents\u002F(primary) caregivers\n* Parents of newborns that did not receive special\u002Fintensive care starting within the first week of life\n* Parents or caregivers of infants born before 1 January 2023\n* Persons with insufficient proficiency of one of the languages of the questionnaire",{"count":83,"type":23},100,"This study aims to explore parents' experiences and emotional burdens related to their newborn's hospital stay using an online survey. Our target population consists of parents of newborns born preterm, with low birthweight, or critically ill. Particularly the presence of infant- and family-centred developmental care (IFCDC) principles as well as support through political framework conditions will be investigated.",[86,87,42,88,89,90,91,92,93,94,95],"Infant, Premature","Infant, Low Birth Weight","Life Change Events","Needs Assessment","Anxiety","Fear","Stress, Psychological","Uncertainty","Emotions","Caregiver Burden",[97,98,99,100,49,101,102,103,104,89,34,42,105,37,106,107,108,109,110,111,112],"Parental needs","Infant- and Family-centred developmental care","IFCDC","EFCNI","Global Parent Survey","Breastfeeding","Breastfeeding support","Politics","Infant, Newborn","Family Support","Family Health","Intensive Care, Neonatal","Patient-Centered Care","Infant Care","Surveys and Questionnaires","Health Care Surveys","NOT_YET_RECRUITING","2025-04-24",{"date":116,"type":65},"2025-04-27",{"date":118,"type":23},"2025-09-01",{"date":120,"type":23},"2027-12-31",{"name":71,"class":72},{"id":123,"slug":124,"hasResults":11,"nctId":125,"briefTitle":126,"officialTitle":127,"acronym":4,"eligibilityCriteria":128,"healthyVolunteers":11,"sex":18,"minAge":20,"maxAge":4,"enrollmentInfo":129,"targetDuration":4,"studyType":24,"phases":4,"briefSummary":130,"conditions":131,"keywords":135,"overallStatus":113,"whyStopped":4,"lastUpdateSubmitDate":143,"lastUpdatePostDateStruct":144,"startDateStruct":146,"completionDateStruct":148,"leadSponsor":150,"locationsCount":73},"100545279","self-assessment-tool-for-implementing-the-escnh-100545279","NCT06379828","Self-assessment Tool for Implementing the ESCNH","Hospital Self-assessment Tool for the Implementation of the European Standards of Care for Newborn Health (ESCNH)","Inclusion criteria Participants will be eligible if they are\n\n* parent representatives or representatives of caregivers of infants who received special\u002Fintensive care,\n* healthcare professionals in the field of neonatology, midwifery, neonatal nursing care, obstetrics, psychology, health sociology, physical therapy, or\n* hospital management.\n\nExclusion Criteria Participants will be excluded if they\n\n* provide insufficient proficiency of English for the eDelphi questionnaires or the languages of the self-assessment tool in the pilot testing, or\n* have a professional background that is not related to the ESCNH \u002F individuals that are not parent representatives or representatives of caregiver of infants who received special\u002Fintensive care.\n* primarily work in the industry.",{"count":83,"type":23},"This study aims to develop a tool for hospitals to self-assess the implementation of the European Standards of Care for Newborn Health (ESCNH), standards defining best-practice procedures for neonatal care. The tool shall support healthcare professionals across Europe to measure the level of implementation of the ESCNH, to identify variations in care delivery, and ultimately to improve neonatal care. To achieve this, healthcare professionals from all relevant backgrounds and parent representatives will be invited to take part in an electronic Delphi consensus approach. A subsequent pilot-testing among at least 10 hospitals across Europe will refine the developed tool, indicate potential errors, ensure user-friendliness, and improve the applicability.",[132,133,134],"Development of a Tool to Assess the Level of Implementing the European Standards of Care for Newborn Health","Testing of the Developed Self-assessment Tool in European Hospitals","Self-Assessment",[136,100,137,138,139,140,141,142],"ESCNH","eDlephi method","Pilot-testing","Implementation","Self-assessment","Tool","Neonatal care standards","2024-04-23",{"date":145,"type":65},"2024-04-25",{"date":147,"type":23},"2024-06-03",{"date":149,"type":23},"2026-09-01",{"name":71,"class":72},""]