Call for patient organizations
The Problem And The Challenge
Children do not respond to medications in the same way as adults. However, the majority of drugs prescribed for children have not been tested in children. Without adequate data from such testing, prescribing drugs appropriately becomes challenging for clinicians treating children, from infancy through to adolescence. Not only does this create a challenge for health professionals but it also places the health of children at stake as available treatments are not always as effective as possible. Parents, children with a (chronic) disease and their organisations must join forces to improve this situation.
To address the current barriers present in paediatrics research, a project called Global Research in Paediatrics GRIP (www.grip-network.org) started in 2011. The main aim of the project is to implement an infrastructure to stimulate and facilitate the development and safe use of medicine in children. GRIP also aims to createconsensus on international standards and methodologies, and tools for paediatric research. GRIP will develop guidelines, training programmes, and paediatric formulations etc.
How Can You Contribute?
The GRIP consortium wants to work closely with patient organisations and affected families. Parents, children with a (chronic) disease and their organisations are needed to contribute to the success of this project by bringing in their views and experiences. On behalf of the European patient umbrella organisation EGAN (www.egan.eu), the Dutch Alliance for Rare and Genetic Disorders VSOP (www.vsop.nl) coordinates the interaction between patient organisations and the researches and paediatricians in GRIP. We are looking for interested patient representatives of European or international patient organisations, to be consulted on issues that the project is dealing with. Your active input and review as a patient, parent or member of an affected family can make a difference in how research with children will be performed in the future.
If you are interested in participating in the GRIP Patient Network to improve research and clinical trials in children please send your contact details by filling the form below. We will keep you informed with the project newsletters, consult you on (ethical) issues where the patients’ perspective is needed and if applicable, facilitate contacts between your organisations and research that may be relevant for your disease.
Please see the Patient stories page (click on the item on the menu on the left) to read stories about paediatric patients (and their parents) who have taken part in clinical trials or other types of paediatric research, as told directly by them.
Please fill in the form with your details if you wish to be part of the GRiP Patient Network. GRiP staff will contact you as soon as possible.