The Federación Española de Padres de NIÑOS CON CÁNCER, requested that families of children affected by this disease receive clear and accurate information about pediatric clinical trials and participate in the drafting of consent and the Ethical Research Committee.
So was said by Pilar Ortega, president of NIÑOS CON CÁNCER, in the First Day of Translational Medicine and Clinical Trials, held today Wednesday at the Hospital Infantil Universitario NIño Jesús, who organized this event with the Spanish Association of Pediatrics and the National Center Cancer Research. In his speech, Ortega explained the three ways to achieve greater involvement of parents in the research:
- Make the Federation part of the information concerning the pediatric clinical trials so they can keep the parents informed.
- Involvement of parents in the drafting of consent which have to be signed for availing the treatment to ensure that they are affordable and complete.
- Intervention of properly trained parents and professionals who know the needs of children in the Research Ethics Committee to analyze the pediatric trials, as in other countries.
At her appearance, Ortega stressed “the disposition of NIÑOS CON CÁNCER to work hand in hand with doctors, researchers and organizations and together overcome the barriers that exist in Spain in relation to pediatric clinical trials”. In this line, the president referred to “the barrier of fear for parents, who need to know for sure what is the best treatment option for our child, so we need clear and accurate information”. “I thank the organizers for the invitation to this conference, I hope it’s a turning point in our common goal, which is to increase awareness and participation in the investigation of pediatric cancer,” she said.
Pilar Ortega also reminded that there is a project of the European Union, the ENCCA, which is preparing documentation in all EU languages in order to explain the pediatric trials consistence and importance. This project has a Parent and Patients Advisory Committee composed of 10 countries of which NIÑOS CON CÁNCER forms part.