An article related to PedCRIN's work has recently been published in Clinical and Translational Science (CTS) entitled 'Involve Children and Parents in Clinical Studies'.
The article highlights the need to involve children/parents in research design, the preparation of patient documentation, and information materials to improve research protocols and enhance research participation.
This article also explained how in the PedCRIN project, the (potential) role of children and/or parents is identified through consultations of YPAGs and patient groups by means of a focus group.
In conclusion, it is stated that paediatric drug research should not be the sole domain of professionals, but should also include patients and parents as stakeholders along the drug development continuum. Patient associations can and do play an important role in initiating and supporting patient involvement