ENMC as PAO umbrella in European Research projects

Background
In the past and also recently, the ENMC office received requests from researchers to support their research grant call being the umbrella of patient advocacy organisations (PAO). This happened for research grants funded by EJPRD, GCC and Horizon2020, and for supporting EU collaboration initiatives like EURO-NMD.

The rationale for including a PAO in a grant call is to i) better understand patient needs and patient-based outcomes and ii) keep the community informed about research progress and potential clinical trials which might derive from this research.

ENMC as PAO umbrella
One good way of achieving this would be by submitting workshop applications to the ENMC to organise workshops with patients and patient representatives invited. One workshop could be organised in the beginning of the project to optimize the patient involvement in the early phase of the project. A second and if needed a third workshop could be organised to discuss the progress of the project and the results coming out of the project.

Involving ENMC as PAO umbrella, and hence co-labelling of project-related workshops with the ENMC signature, implies mandatory prior evaluation of applications by the ENMC Research Committee and validation by the ENMC Executive Committee. Also these EU project-related workshop applications should compete with the regular ENMC workshop applications during the bi-annual review rounds.

In summary, ENMC can be involved as PAO umbrella in grant calls for EU-projects, but it should be strictly limited to reviewing applications, organising workshops and disseminating the outcomes of the workshops via its mandatory lay and full scientific reports. Please click here for the full Policy ENMC involvement in EU-projects as PAO umbrella.

If you are interested and/or have any questions, please don’t hesitate to contact us at enmc@enmc.org.