MUSCO uses its own vocabulary with regard to family involvement and the nature of the projects that are carried out within the Initiative. The following lexicon can therefore be helpful in clarifying certain concepts.

Working Group

Team formed specifically to carry out MUSCO projects. Each of the working groups is supervised by a clearly identified project leader who guides team members toward achieving the project’s objectives. A number of MUSCO working groups involve Patient Resources and stakeholders from the Initiative’s partner institutions. The working groups meet as frequently as deemed necessary, based on the project’s needs.

Patient Expert

Parent, patient or caregiver, member of the MUSCO Advisory Pole. Patient Experts have significant experience and a relevant profile directly related to the objectives set by the Initiative. It should be noted that a Patient Expert can also act as a Patient Resource.

Patient Resource

Parent, patient or caregiver, member of a MUSCO Working Group. Patient Resources participate in MUSCO working groups and are active contributors to the Initiative’s projects.

Joint Project

Project carried out and developed in a joint and collaborative manner by the four partner institutions of the Initiative, for the benefit of patients and their families.

Major Project

Project carried out and developed by one of the partner institutions and for which the project leaders are encouraged to liaise with the other partner institutions.