6 -Public Involvement
|
Quality
Management |
Training and
Education |
Public
Involvement |
| Description | ||
|---|---|---|
Name |
PEDSTART - French national paediatric research network |
|
| Involvement of patients, parents or their organisations in the protocol design | Yes | Young people (patient or not) are involved within Kids France activities within the RIPPS network. Kids France is directly connected with PEDSTART through the membership of the RIPPS network. Kids France is a Young Person Advisory Group (YPAG), cofounder of eYPAGnet. Activities of eYPAGnet in Europe are the development of common resources and tools. Segolene Gaillard is the main contact for this activity. Kids France is based in Lyon (CIC, Hospices Civils de Lyon, RIPPS). Members of Kids France are patients or young people aged 12 to 18 years old who are involved at all steps of clinical development and in activities related to pediatric clinical research. Members of Kids France are trained to clinical research. Contribution and advice (voice) of young people are possible during specific meetings on different subjects (different pathologies, review of protocols, information documents, conception of projects…). Kids France is also leading disease groups to answer questions related to one particular or a group of diseases. Patients contribution is also possible through the EUPATI-France project (European patients academy on therapeutic innovations, FCRIN & RIPPS). |
| Involvement of patients, parents or their organisations in creating the protocol info package | Yes | The group RIPPS Kids France has been involved in several reviews of study design and nformation documents dedicated to young patients enrolled in research projects since 2015. Evaluation and impact of activities is on going. |
| Involvement of patients, parents or their organisations in prioritisation of needs for Clinical Trials | Yes | This activity is currently under development within RIPPS Kids France and participation to projects such as SONG Kids in chronic kidney disease and Kidsrare (French project in rare diseases). |