The EPTRI Work Package 11 partners elaborated a toolkit to educate children, young patients and families on basic and translational paediatric research.
The toolkit was designed incorporating the outcomes and conclusions obtained from the workshop with stakeholders and the roundtable with young people celebrated within the framework of the 3rd EPTRI General Assembly held in Madrid at the Ministry of Health, Consumption and Social Welfare on the 27th and 28th of March 2019.
The toolkit is an interactive tool consisting of an animated video and independent clips with resources for patients and families.
The resources included in the toolkit are clustered in 7 groups: Basic Research, Translational Research, Donation of Patients Samples, Animal Testing, Patient and Public Involvement (PPI), Fundraising and Ethics. The video describes a case that illustrates how a paediatric medicine is developed, starting from basic research studies and going through all the steps that lead to successfully accomplish this process.
The case is a new potential therapy for paediatric retinoblastoma that uses a genetically modified virus to eliminate the tumour cells in the retina, avoiding the need for surgery and eye removal in children.
The design of the toolkit also took into consideration the information gathered by members of the YPAGs, who also reviewed the script of the video.
The interactive tool has been published in the EPTRI YouTube channel and integrated in the EPTRI website and it also has the option of sharing in social media channels.
It is available at this link: https://eptri.eu/basicresearch/