ArticleCancer reports (Hoboken, N.J.)2022
Setting international standards for patient and parent involvement and engagement in childhood, adolescent and young adult cancer research: A report from a European Collaborative Workshop.
Article in Cancer reports (Hoboken, N.J.), 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.
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.
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Who cites it
17 citing papers in PubMed, 19 citations in OpenAlex.
- "MyLogbook-I Know My Way Around": A Psychological Therapy Program to Enhance Health Literacy and Positive Emotional Adjustment in Pediatric Oncology.Psycho-oncology · 2026Trial
- Lived experience leadership in cancer research: a scoping review of conceptual definitions, roles, responsibilities, and impacts.Journal of cancer survivorship : research and practice · 2026Review
- Evolution of Patient and Public Involvement and Engagement in Health-Related Research: A Concept Analysis.Journal of advanced nursing · 2026Review
- Involving family caregivers in co-design research: a systematic review protocol for developing evidence-based engagement strategies.BMJ open · 2026Article
- Measuring impacts of patient and public involvement and engagement (PPIE): a narrative review synthesis of review evidence.Research involvement and engagement · 2025Review
- Patients, parents and professional perspectives on molecular radiotherapy for neuroblastoma and paediatric neuroendocrine cancers.Nuclear medicine communications · 2025Article
- Co-design of family interventions in cancer: a scoping review protocol to assess key methods and processes.BMJ open · 2025Article
- Article
- Asking those who know their needs best: A framework for active engagement and involvement of childhood cancer survivors and parents in the process of psychosocial research-A workshop report.Cancer reports (Hoboken, N.J.) · 2024Article
- Parental Engagement in Identifying Information Needs After Newborn Screening for Families of Infants with Suspected Athymia.Journal of clinical immunology · 2024Article
- Engaging children and adolescents in the design and conduct of paediatric research.Frontiers in pediatrics · 2024Article
- Research involvement and engagement of adolescent and young adults in a cancer trajectory: a 5-year experience from a patient support facility at a university hospital.Research involvement and engagement · 2023Article
- Good to know - This is PPIE! Development of a training tool for public and patient involvement and engagement in pediatric oncological research.Cancer reports (Hoboken, N.J.) · 2023Article
- Advances in the clinical management of high-risk Wilms tumors.Pediatric blood & cancer · 2023Review
- Parent values and preferences underpinning treatment decision-making in poor-prognosis childhood cancer: a scoping review.BMC pediatrics · 2022Article
- Patient-led research and Advocacy Efforts.Cancer reports (Hoboken, N.J.) · 2022Article
- Setting international standards for patient and parent involvement and engagement in childhood, adolescent and young adult cancer research: A report from a European Collaborative Workshop.Cancer reports (Hoboken, N.J.) · 2022Article
Corrections and comments
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Authors and funding
5 authors at 4 institutions in 2 countries.
Funding
Abstract
backgroundPatient and Public Involvement and Engagement (PPIE) in research, advocates for research conducted 'with' not 'for' the affected population. In paediatric oncology research, the parents of children, adolescents and young adults affected by cancer are represented by the term 'public' in the acronym PPIE. Patients (those with cancer and cancer survivors) are also passionate advocates who drive forward the research priorities of children, adolescents and young adults throughout the entire research process.
aimsA workshop was held at an international professional meeting in 2019 with the aim to define Patient and Parent Involvement and Engagement (PPIE); capture PPIE activities on a European level; and to explore the role of PPIE in non-interventional research. A proposed framework for a European PPIE strategy for childhood, adolescent and young adult cancers was also discussed.
methodsThe 60-minute workshop was attended by health care professionals, researchers, scientists, parents, survivors and charity/support organisations. A presentation to define PPIE, including the difference in terminology for PPIE in the context of childhood, adolescent, and young adult cancers was discussed. Best practice examples from the United Kingdom (UK) helped to demonstrate the positive impact of PPIE in paediatric oncology research. Three breakout groups then explored themes relating to PPIE, namely PPIE priorities, PPIE mapping for Europe, and PPIE in non-interventional research and data-linkage.
resultsDisparity in PPIE activities across Europe was evident, with ambiguity surrounding terminology and expected roles for PPIE representatives in paediatric oncology research. A lack of PPIE activity in Eastern Europe correlated with a lack of availability for clinical trials and poorer survival rates for paediatric oncology patients. There was unanimous support for PPIE embedded research in all areas, including in non-interventional studies.
conclusionA European-level definition of PPIE for paediatric oncology research is needed. Further exploration into the role and responsibilities of patients, parents, and professionals when undertaking PPIE related activities is also recommended. Best practice examples from the UK, France, Germany, The Netherlands and Belgium demonstrated a preliminary evidence base from which a European PPIE strategy framework can be designed, inclusive of the patient and parent voice.
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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.