Conect4children (c4c)

In a recent WCMR Science Seminar, we heard from Project Manager Becca Leary from the John Walton Muscular Dystrophy Research Centre about Conect4children (c4c), a large public-private funded network established to increase the efficiency of paediatric clinical trials across Europe. A small team from Newcastle University are leading on the data and education aspects of this work. Read on to find out more.

Despite the advances in health care and research it is still common practice to prescribe medicines for children “off label”, this means they have not been tested in children. Why should this matter? Children are not just small adults, they breakdown drugs differently to adults and can suffer from more severe side effects.

To bring better medicines to children, researchers must conduct clinical trials in this population. This is challenging due to societal, regulatory ,and logistical challenges of conducting research in children. Conect4children was established to address the barriers to conducting clinical trials in children, the project works across Europe, identifying hospitals with the expertise to conduct research in children. As well as supporting pharmaceutical companies to recruit children for the studies the project is also establishing the following:

  • Expert groups made of clinicians, methodologists, researchers and patients / parents who can provide advice to support the planning of trial design.
  • The c4c Academy, offering training courses so that staff conducting paediatric research are knowledgeable and educated in best practice
  • Data harmonisation tasks- including a data dictionary. This means that data collected from children will be standardised and can be re-used in the future, maximising the research potential
  • Communication tasks to inform the general public about the importance of clinical trials and remove some of the common misconceptions.

The presentation highlighted the success of c4c and the importance of developing an infrastructure to support paediatric research.