Develop Partnerships [Community Advisory Board (CAB) Formation].  Using the principles of community engaged research; our project team will develop and formalize relationships with twenty two stakeholders who will be engaged in every aspects of the project development process. These stakeholders will comprise the members of a formalized genetic concept Community Advisory Board (CAB). Seven of the CAB members have already been recruited by the research team members and engaged from the inception of the project through the application preparation and submission. Additional fifteen CAB members have been recruited at the beginning of the project by the research team members.

Members of the Research Team

Members of the Community Advisory Board-CAB

CAB Meetings. The CAB will convene six meetings at Children’s Mercy Hospital or other locations suggested by the stakeholders during the twelve month project period and will work closely with the research team to develop the strategic direction of this engagement/ educational program. CAB members will be strongly encouraged to attend a minimum of 80% of all meetings in person, by telephone or video conference. The specific tasks and activities of each meeting are described below:

Meeting’s Agenda (Tentative)

Meeting 1 (click for agenda)

Meeting 2 (click for agenda)

Meeting 3 (click for agenda)

Meeting 4 (click for agenda)

Meeting 5 (click for agenda)

Meeting 6 (click for agenda)

Surveys. Two sets of surveys will be distributed among all the study participants (members of the research team and CAB) throughout the project: project-evaluation survey (n=2) and session-evaluation surveys (n=6).

Memorandum of Agreement (MOA). To ensure open, honest and transparent communication the research team and CAB members will collaboratively draft a memorandum of agreement (MOA) that clearly outlines the board’s governance structure as well as the roles and responsibilities of each member of the collaborative team. This memorandum of agreement will articulate our team’s commitment to respect and value feedback from all members of the research partnership; to be clear and transparent in compensation; and to engage in honest, and fair communication. We will also concur in our MOA that all CAB members will be equitably engaged in the study process.

Project Website. Study participants (research team and CAB members) will be granted access to the password protected project’s website to allow them to review progress and give feedback and questions at their convenience by either posting online comments or directly sending emails to the PI. The website will be used to archive a summary of all communications, CAB meeting minutes, and related documents (for example, slide presentations) for the project. Dynamic communications among the study team members will be also managed/documented through the project website.