ArticleArchives of disease in childhood. Fetal and neonatal edition2005
What do parents think about enrolling their premature babies in several research studies?
Article in Archives of disease in childhood. Fetal and neonatal edition, 2005. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT01232621 (A Randomized Pilot Study of Different Methods of Approaching Substitute Decision Makers Regarding Research Participation in the Intensive Care Unit), which is not on this map. Cited by 25 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
A Randomized Pilot Study of Different Methods of Approaching Substitute Decision Makers Regarding Research Participation in the Intensive Care Unit: The Approach Study
Who cites it
25 citing papers in PubMed, 2 syntheses or guidelines pooled it, 77 citations in OpenAlex.
- Parental Views of Facilitators and Barriers to Research Participation: Systematic Review.Pediatrics · 2023Pooled it
- Pooled it
- Trial
- Challenges of a simplified opt-out consent process in a neonatal randomised controlled trial: qualitative study of parents' and health professionals' views and experiences.Archives of disease in childhood. Fetal and neonatal edition · 2021Trial
- Two speeds of increasing milk feeds for very preterm or very low-birthweight infants: the SIFT RCT.Health technology assessment (Winchester, England) · 2020Trial
- A quality improvement project to optimize the neonatology research experience for families.Journal of perinatology : official journal of the California Perinatal Association · 2026Article
- Unique Patterns of Circulating Extracellular Vesicles in Preterm Infants During Adaptation to Extra-Uterine Life.Journal of extracellular vesicles · 2025Observational
- Practical approaches for supporting informed consent in neonatal clinical trials.Acta paediatrica (Oslo, Norway : 1992) · 2024Review
- Co-enrolment to UK Critical Care Studies - A 2019 update.Journal of the Intensive Care Society · 2022Article
- Parental Attitudes toward Consent for Music Intervention Studies in Preterm Infants: A Cross-Sectional Study.International journal of environmental research and public health · 2021Article
- Informed consent for neonatal trials: practical points to consider and a check list.BMJ paediatrics open · 2020Review
- Patient and caregiver engagement in research: factors that influence co-enrollment in research.Pediatric rheumatology online journal · 2019Article
- Co-enrolment of Participants into Multiple Cancer Trials: Benefits and Challenges.Clinical oncology (Royal College of Radiologists (Great Britain)) · 2017Review
- Educating Parents About Pediatric Research: Children and Clinical Studies Website Qualitative Evaluation.Qualitative health research · 2016Article
- Ethical and scientific considerations for patient enrollment into concurrent clinical trials.Trials · 2014Review
- Mothers of babies enrolled in a randomized trial immediately after birth report a positive experience.Journal of perinatology : official journal of the California Perinatal Association · 2014Article
- Challenges and successes of recruitment in the "angiotensin-converting enzyme inhibition in infants with single ventricle trial" of the Pediatric Heart Network.Cardiology in the young · 2013Article
- Co-enrollment of critically ill patients into multiple studies: patterns, predictors and consequences.Critical care (London, England) · 2013Observational
- Making co-enrolment feasible for randomised controlled trials in paediatric intensive care.PloS one · 2012Review
- Neonatal research: parent's perception of informed consent.Indian journal of pediatrics · 2010Article
Corrections and comments
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Authors and funding
4 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo investigate parents' opinions about enrolling their premature baby into several research studies in the few days after birth. METHODOLOGY: A questionnaire was given to parents of premature babies in the neonatal intensive care unit who had been invited to join several studies (two to seven).
resultsAll 50 mothers and 42 of 48 fathers completed the questionnaire independently; 28% had been asked to join two studies, 32% three, 24% four, 14% five, and 2% six studies. There were 61 babies with mean (SD) gestational age 26.9 (1.6) weeks and birth weight 877 (249) g. Nearly three quarters (71%) of the parents thought it was very good for their baby to be in a hospital that was carrying out a lot of research. Most (93%) thought that their baby would get the same or better care in a study. Only 15% thought their baby was too small for research studies. Almost all (98%) wanted to be involved in the decision about their baby joining a study. Only 22% were worried about the number of studies; 10% would not enroll their baby in any studies, but 74% were willing for their baby to join two or more studies, and 10% would enroll in all the studies. Most (94%) believed that their baby's participation would improve care of future babies.
conclusionsMost of these parents were willing to join several studies. The majority were not worried about their baby participating in the studies. The profession needs to be aware that parents are supportive of neonatal research and participation in multiple studies.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.