Understand hdsa is undertaking a redesign of their CoE structure.. Wonder what that means for those of us in the trenches. Hope they look at what the community expects and needs. And, what it will take to be responsive to those needs from a global as well as an individual or regional/local perspective.

Lines of communication to/from the south of Maryland sometimes get distorted. Does anyone have insight what is going on?

Fred Lothrop

HDSA provided an update on what they are doing in a PDF document they published earlier. I've copied the summary from that document here which I think might explain what's going on.

Conclusion

The HDSA Center of Excellence program embodies HDSA’s commitment to providing high quality multidisciplinary care and broad research opportunities to the HD community - “care and cure.” Building on the successes of the program, and expanding coverage to underserved areas of the country, are a priority in HDSA’s five year strategic plan.

The first step in implementing the goals of the strategic plan is an upcoming comprehensive evaluation and review of the current 21 HDSA Centers of Excellence. The program evaluation will commence in January 2013 and run through 2014.

The program review may address such issues as:

• How has the program fared in achieving its stated goals?
• What has changed in our understanding of HD over the past decade and how should that affect the approach to care?
• Can technology be used to improve communication between center staff, clients and their primary care physicians?
• How can care for late stage people with HD be improved?
• How can novel research be fostered?
• What standards should be required of Centers?
• How can reporting methods be standardized?
• How often should Centers be recertified and with what criteria?
• What can HDSA do to best support the Centers’ mission to create stable, local orregional centers providing the best possible clinical care and services for people affected by HD and their families?

Careful assessment of the current Centers will help HDSA fine tune the guidelines for inclusion in the program and serve as a road map for creating new programs, expanded access to care, and innovative methods of delivery. It is hoped that this Report from the Field will serve not only as a retrospective of the HDSA Center of Excellence program but also as a resource for program reviewers.

The review and renewal process will help HDSA use available resources in the most effective manner possible, so that the organization can continue to expand the HDSA Center of Excellence program and enhance access to experienced, multidisciplinary care for people with HD.

Thanks Steve,

Read all that and the grand Plan on the hdsa site, several times.

Given errors in and the length of the monkey's Client Satisfaction Survey, question the validity of our responses as input to their assessment

Proof of the pudding will be in the details and execution.

Fred Lothrop