Institute on Disability


Stakeholder feedback offers a range of critical and helpful insights into the potential next steps for the collaborative as it carriers on activities for Project Year Five and plans for a new grant application. To facilitate this feedback, the NEGC conducts an annual survey of its stakeholders to identify concerns, document how the project is doing, and solicit suggestions for improvement. One hundred forty-one email invitations were sent out between October and November 2011 to stakeholders of the New England Genetic Collaborative (NEGC). Of these, one opted out and 63 provided responses (45% response rate).

Since the 2009 report, there was improvement in two important areas. When asked whether they had a clear understanding of the NEGC's mission, 73% agreed (vs. 60% in 2009). Concerning whether the NEGC had made substantive and clear progress in achieving its mission, 72% agreed (vs. 47% in 2009). Feedback on the project's evaluation reports was generally positive with 67% to 70% of respondents indicating that each of the reports helped them understand the progress and challenges of the initiative (vs. 60% to 75% in 2009).

Feedback from the Advisory Council was high this year, with 13 members participating. Most participants (>75%) felt that there was a good spirit of cooperation, that meetings were well run, that the RCC provided excellent support and responded effectively to questions, and that the Advisory Council was achieving its main objectives.

Project recommendations highlight the need for continuing to strengthen communication efforts of the NEGC, identifying new collaboration opportunities for members of the Advisory Committee, making effective use of potential stakeholder contributions, improving consumer/family representation in regional change, pursuing sustainable initiatives, addressing multiple barriers to care for families, and improving access to NEGC resources.

Results are separated into: context of the report (p.2), survey results (p.3), and recommended areas for followup (p.9).

Publication Date



Durham, NH: University of New Hampshire, Institute on Disability

Document Type