Objective 
The objective of this project is to review the possibilities and means available in the field of data sharing in paediatric clinical research and to suggest the involvement of young persons to improve information and results dissemination.
Methods 
We conducted a literature review on pubmed without time consideration based on the defined eligibility criteria and the keywords, Pediatric and Data sharing or Information dissemination and Clinical trial, mentioned in the abstract and the title. We will continue with expert young persons involvement.
Results 
On Pubmed, we found 902 articles using the pre-established search strategy. Given the eligibility criteria, 21 relevant articles were selected.
Based on our previous experience, we know that contrary to many studies and efforts that have been made to improve the quality of patients’ health care provision to young patients and their families’ satisfaction, unfortunately, the matter of the information dissemination to these children according to their health conditions and considering the sensitivity of their low age, has been minimal.
We expect that the results of the review will show relevant information about the means used to disseminate the results at the end of a clinical research in children. To evaluate the relevance of the dissemination ways, we will consider concepts such as minimizing harm to children by disseminating information, protecting the privacy of their information, making it possible for children to directly ask questions from their physician and consult with them.
As an effective way of disseminating information in paediatric clinical studies, the participation and accompaniment of experienced and expert young persons in this regard willbe studied. We expect valuable results such as i) friendly and effective communication with young patients and families ii) information dissemination in a friendly atmosphere appropriate to patients’ conditions and iii)boosting hope and efforts to recover, building up self-confidence and self-esteem in young patients as well as children who participated in this pathway.
Conclusion
Our first results indicate that there is a shortage of studies on the information dissemination in paediatric clinical trials and there are many challenges that should be addressed. Our completed review will provide information on needs and expectations, particularly from patients and their families in terms of results information. Providing direction and moving towards effective results in this regard requires the agreement and the creation of new insights and standards that will surely take into account the children’s conditions. The involvement of young persons advisory groups in the information dissemination at the clinical level is a practical and effective strategy that should be designed as much as possible to empower them, and benefit ultimately from its advantages.

Means to improve information dissemination in paediatric clinical trials: involving young persons to improve dissemination

DIA Europe 2019

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