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Background Rare diseases (i.e., incidence of <1/2000) are individually uncommon, but collectively these 10,000 conditions affect an estimated 473 million people globally, and approximately 70% of rare diseases manifest in childhood. Despite this global impact, 90% of rare diseases lack effective treatment. Treatments for rare diseases are often identified through clinical trials. Identifying parents’ knowledge needs and preferences regarding pediatric rare disease clinical trials is an important aspect of empowering parents, improving clinical research practices, and potentially improving recruitment to these vital trials. The aim of the scoping review is to determine the extent, range, and characteristics of the evidence on the knowledge needs and preferences of parents regarding pediatric rare disease clinical trials. Methods A scoping review will be conducted to identify sources of literature on the topic. A systematic search strategy co-developed with a research librarian will be conducted in six databases (Medline, EMBASE, CINAHL, Scopus, Web of Science, and PsycINFO). Gray literature will be searched via Google, Perplexity AI, the ProQuest Dissertations & Theses Global database, and relevant rare disease organizational websites. Abstract and full-text screening will be conducted by two reviewers independently. Studies in English will be included regardless of study design, date of publication, or location of study/publication. Study quality will be appraised using the Mixed Methods Appraisal Tool. Data will be extracted including study characteristics, population, phenomena under investigation, and knowledge needs and preferences identified. Analysis will involve a descriptive numerical summary and qualitative content analysis. Findings will be presented in evidence tables, and patterns, themes, and gaps across the data will be reported using a narrative approach. Discussion This review will provide an overview of the existing literature regarding parents’ knowledge needs and preferences about pediatric rare disease clinical trials. The findings of this review will inform future research and the development of knowledge translation resources for parents of children with rare diseases. Systematic review registration This protocol has been registered in Open Science Framework (registration: https://doi.org/10.17605/OSF.IO/QXR8G ).

Childhood immunisation is a critically important public health initiative. However, since most vaccines are administered by injection, it is associated with considerable pain and distress. Despite evidence demonstrating the efficacy of various pain management strategies, the frequency with which these are used during routine infant vaccinations in UK practice is unknown. This study aimed to explore primary care practice nurses' (PNs) use of evidence-based pain management strategies during infant immunisation, as well as barriers to evidence-based practice. A questionnaire was developed and distributed to nurses throughout the UK via convenience sampling in paper and online formats. Questions assessed the frequency of pain management intervention use during infant immunisation and barriers to their use. A total of 255 questionnaire responses were received. Over 90% (  = 226) of respondents never used topical anaesthetics or sweet solutions during immunisations, while 41.9% advised breastfeeding occasionally (  103). Parent-/caregiver-led distraction was the most frequently used intervention, with most nurses using it occasionally (47.9%,  116) or often (30.6%,  74). Most practices had no immunisation pain management policy (81.1%,  184), and most PNs' previous training had not included pain management (86.9%,  186). Barriers to intervention use included lack of time, knowledge and resources. Excluding distraction, pain management strategies were infrequently or never used during infant immunisation. Key barriers to using evidence-based strategies were lack of time, knowledge and resources.