In 2016 TEDDY has developed a survey (launched in October 2016 and closed on April 2017) aimed at collecting information on paediatric trials centres including information on their structural organisation and activities in paediatric research. This action was especially needed in light of the relevant challenges in the field of the medical treatment for children, such as:
- the several medical treatments of children based on the evidence available following only research in adults, despite the differences in treatment effects between young and adult patients;
- the ethical, methodological and economic factors impacting on paediatric trials feasibility;
- the need of cooperation of multidisciplinary competences as well as complementary supporting activities, services, infrastructures;
- the increasing need to measure performances in conducting studies at single centres or at research networks level, even if both the performance indicators to be measured and the appropriate metrics to measure the centres/networks performance is not yet fully defined.
Even if the TEDDY survey was not direct to measure performances of the sites, it could be regarded as a pilot exercise on this issue involving a large number of paediatric centres in different countries and providing a preliminary description of the current status of the investigated centres with reference to some performance indicators/groups of indicators.
The survey results will be soon published and will provide a broad overview of the paediatric trials centres capacities and expertise in EU as well as an analysis of the feasibility of using complex online questionnaires and the paediatric research centres’ availability to be submitted to Performance measurements.