ArticleTherapeutic innovation & regulatory science2019
Role of Patients and Parents in Pediatric Drug Development.
Article in Therapeutic innovation & regulatory science, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
16 citing papers in PubMed.
- Parental perception of treatment options for mucopolysaccharidosis: a survey to bridge the gap for personalized medicine.Orphanet journal of rare diseases · 2025Article
- Development of a core outcome set for recurrent acute and chronic pancreatitis: Results of a Delphi poll.Pancreatology : official journal of the International Association of Pancreatology (IAP) ... [et al.] · 2024Article
- A matrix tool to foster patient engagement in children, adolescents and young adults: report from a multistakeholder workshop.Research involvement and engagement · 2024Article
- Rarer dementias, limited options, and unaddressed needs.International psychogeriatrics · 2024Article
- Conducting Drug Treatment Trials in Children: Opportunities and Challenges.Pharmaceutical medicine · 2024Review
- Co-designing clinical trials alongside youth with chronic pain.Paediatric & neonatal pain · 2023Article
- Involving adolescents in the design, implementation, evaluation and dissemination of health research: an umbrella review protocol.BMJ open · 2023Article
- Changing incentives to ACCELERATE drug development for paediatric cancer.Cancer medicine · 2023Article
- Non-static framework for understanding adaptive designs: an ethical justification in paediatric trials.Journal of medical ethics · 2022Article
- Developing a More Tailored Approach to Patient and Public Involvement with Children and Families in Pediatric Clinical Research: Lessons Learned.Therapeutic innovation & regulatory science · 2022Review
- Informed consent and assent guide for paediatric clinical trials in Europe.Archives of disease in childhood · 2022Article
- Improving clinical paediatric research and learning from COVID-19: recommendations by the Conect4Children expert advice group.Pediatric research · 2022Article
- Facilitators and barriers to the training and maintenance of young persons' advisory groups (YPAGs).International journal of pediatrics & adolescent medicine · 2020Article
- Involve Children and Parents in Clinical Studies.Clinical and translational science · 2020Article
- Developmental Pharmacodynamics and Modeling in Pediatric Drug Development.Journal of clinical pharmacology · 2019Review
- Innovation and Opportunities in Pediatric Therapeutic Development.Therapeutic innovation & regulatory science · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
13 authors.
Funding
Abstract
Patient engagement in health care has been an emerging priority in the global effort and move toward the consideration of patients as experts of their own conditions. However, the input of pediatric patients and their families have not been consistently requested nor regarded as valuable when deriving protocols for, as well as assessing the outcomes of, pediatric clinical trials. Extending this mutual collaboration further upstream is important, especially in the area of pediatric drug development where the lack of formalized trials for children and adolescents result in the increased use of off-label prescribing and risk of adverse effects. While recent changes to European and North American legislation contributed to the inclusion of children and youth in pediatric drug development, the lack of systematic guidelines and methodologies in literature serve as barriers for practical application. When combined with the work of external pediatric advocacy and patient advisory groups, the hope is that pediatric patient voices can be brought forward for the future. This article brings together international experts to review current best practices, progress from regulatory agencies, as well as global advocacy efforts to involve patients and families in the pursuit of drug development processes that value the voice of children and youth.
Indexed as
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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.