6 -Public Involvement
|
Quality
Management |
Training and
Education |
Public
Involvement |
| Description | ||
|---|---|---|
Name |
INFANT - Irish Centre for Fetal and Neonatal Translational Research |
|
| Involvement of patients, parents or their organisations in the protocol design | Yes | Parent groups have been involved in the generation of Patient Information Leaflets and Informed Consent Forms and their input has been included in the section on informed consent in the protocols. A trial specific Parent group was formed for the NEMO-1 trial who met with the Ethics advisory Board to draft and comment on the PIL and ICF and this input was documented in the NEMO-1 clinical trial protocol. BLISS UK were approached for comment and input into the NEMO-Lido PIL and ICF and this was documented in the project reports for the work package involved. BLISS- UK have also provided a parental view point and guidance to the HiP clinical trial project. Additional ad-hoc parent advice and input was sough during the drafting phase of the HiP PIL and ICF. |
| Involvement of patients, parents or their organisations in creating the protocol info package | No | |
| Involvement of patients, parents or their organisations in prioritisation of needs for Clinical Trials | Yes | European Foundation for the Care of Newborn Infants (EFCNI) have been involved in three H2020 consortium applications with INFANT and will provide patient advocacy and patient input and advice to these projects if funded. Mandy Daly Patient advocate and founder of Irish Neonatal Health Alliance which is under the umbrella of EFCNI - European Foundation for the Care of Newborn Infants is an advisor to INFANT. |