Parents' and children's needs in the drug development process

It is essential to develop drugs that meet the needs of children, young people, and their families. It is therefore crucial for children and their parents to be involved in the development and conduct of studies. Recently, there has been an increased interest and existence of frameworks and initiatives describing good practice for parents/children's involvement in medicines development, and the authors believe that their involvement should be standard practice. However, the current fragmentation of data and duplication of efforts across and within pediatric networks constitute barriers to a reinforced collaboration for effective research and drug development. Lack of research for children/young patient's pathologies, inequalities in availability, delayed access, and unaffordable treatments are some of the identified unmet needs covered in this chapter. The authors also analyze the parents/children's perspective on how the future of pediatric drug research and development could be improved for the maximum benefit of the pediatric population.