The update of the disease information texts on paediatric rheumatic diseases has been performed with the help of several experts (paediatricians and healthcare professionals of the PRINTO/PReS network) and lay members of PRD family associations. Highly specialised working groups have been formed for the update of each specific disease text, whereas the parents’ network ensured both reader-friendliness and completeness on everyday life and therapy issues. Afterwards, this final version has circulated among all the working group members for further reading and revision.

The updated English texts were then translated with the help of a professional agency in 14 languages (on the basis of national population and language diffusion). For all remaining languages, a translation process started with the involvement and volunteer contribution of all PRINTO/SHARE partners. The PRINTO national coordinators had the role to organize and lead the work process. To facilitate the translation process, the source texts in English were uploaded on a dedicated online platform implemented by PRINTO.

The new version of the website has been designed to adapt to the various portable devices, and allows all technical supports to browse easily among the contents – from a technical point of view, multimodality and user friendliness have been identified as the main characteristics to satisfy. Being a tool for families and patients, it includes customised illustrations created by professional illustrators, the possibility to share contents via the main social networks and a Search button (also available for voice search on smartphones), along with a map locating the centres and associations via Google Maps.

In order to ease the contents’ consultation for the patients and their families, PRINTO has implemented an APP for Android operating system. Its design and structure reflect the website, with three main sections. The aim is to implement the same tool also for iOS and Windows.

Parent survey: in order to mirror the WP4 survey for physicians and have a clear picture of the standards of care from a patient/parent point of view, a dedicated survey has been prepared in a collaborative effort between Dr Nico Wulffraat and the ENCA (European Network for Children with Arthritis) members, represented by Ms Claudia Grave. The patient/parent survey has been translated in the following languages: Arabic, Czech, Danish, Dutch, English, French, German, Greek, Hebrew, Italian, Latvian, Lithuanian, Polish.

Portuguese, Serbian, Slovak, Slovenian, Spanish.

Currently, almost 500 patients have completed the SHARE parent Survey.

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