Right to know
The basis for any clinical research involving children should be the children’s right to be informed on what will happen to them. That’s the idea behind the project called Deferiprone Evaluation in Paediatrics: .
“Children have the right to know in advance which medicines they need and why”, says Professor Adriana Ceci, Scientific Coordinator of the DEEP project. “They should be allowed to express their own views and granted the right to participate in the decision-making process concerning their own health”.
Videos and cartoons
The TEDDY project is a first attempt at achieving this by using animated videos and cartoons explaining the use of medicines to children aged 4 to 7 years. The materials were developed in a collaborative effort between pharmacologists, pediatricians, child psychologists and animation experts.
Boost their pride
The DEEP project aims to inform children about experimental drugs, the final objectives of the DEEP study and the importance of such research. “We want to increase their sense of responsibility and boost their pride for being part of such fundamental research”, explains Professor Ceci. “We are convinced that if they are proud to make a difference for other children, the trial will get surprisingly high participation rates”.
Satisfy their curiosity
A series of booklets with age-tailored information completes the DEEP informative package for patients. “These pamphlets have different levels of complexity: only illustrations for very young children, appropriate information given in simple language for patients up to 10 years old and a complete description of the trials in the booklet dedicated to adolescents in order to satisfy their curiosity and capacity to understand. The documents have also been translated into the language of the countries participating in the DEEP trial”, adds Professor Ceci.
Fundamental for success
The DEEP project is a large international study to evaluate the efficacy and safety of deferiprone, a medicine used to treat patients affected by congenital anemia in need of transfusion therapy. “It is a pediatric project calling for the active participation of patients ranging in age from 1 month to 18 years affected by transfusion-dependent haemoglobinopathy, a pathology causing iron accumulation in the organism”, concludes Professor Ceci.
“Having cooperative, empowered patients is fundamental for the success of the research, but most of all, a therapeutic good impression is what will make a difference to the future lives of these children”.
More information on the DEEP project page on HorizonHealth.eu.