European Medicines Agency - Regulatory - Regulation of medicines

6 -Public Involvement



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PENTA- ID - Paediatric European Network for the Treatment of AIDS and Infectious Diseases

Involvement of patients, parents or their organisations in the protocol design Yes Patient advocates are members of the PENTA-ID Steering Committee and are involved in the protocol design. Consultations have been undertaken with childrena and young people patient groups such as CHIVA youth in the UK about trial issues
Involvement of patients, parents or their organisations in creating the protocol info package Yes Input on Patient information sheets is received from patient advocates and specialist nursing staff
Involvement of patients, parents or their organisations in prioritisation of needs for Clinical Trials Yes Patient advocates are formal members of the PENTA-ID Steering Committee which decides which studies to take forward. Questionnaires have been sent to patients about trial priorities