Summer
is here at last! Children are
out of school, vacations are on the calendar, and
we can all plan a few evenings in the park or the
backyard to just enjoy the warm
weather. Here at MSGRCC we're
finishing up the work of last year (which ended
May 31) and getting started on our new activities
for year five of our cooperative
agreement. Here are some of the
highlights:
Strategic
planning is high on the agenda of the Genetic
Services Branch (GSB) at HRSA, our
funder. GSB undertook a very
intensive and comprehensive strategic planning
effort over the past year, including providers,
public health officials, and consumers from all of
the regions. Numerous important
tasks were identified, and once this was done, a
process of feasibility testing and priority
setting resulted in four broad areas of focus for
the future. These are: 1)
improve quality and access to genetic services; 2)
integrate data collection and assessment systems;
3) integrate genomic information into the medical
home; 4) develop best practices that include
support services for families.
Regional collaboratives will now work with
these areas of focus to undertake their own
strategic planning, identifying specific
priorities that are consistent with the needs of
the particular region. MSGRCC
has begun this process, with the next step being a
strategic planning session with our Advisory
Council at the annual meeting in July.
The
National Coordinating Center for the Regional
Genetic and Newborn Screening Service
Collaboratives (NCC) held the Project
Director/Project Manager (PD/PM) interim meeting
in Chicago on June 6th.
Attending the meeting on behalf of MSGRCC
was Dr. Steve Amato, serving in place of Dr. Celia
Kaye. Joyce Hooker and Liza
Creel also attended as usual. The meeting, titled
Extending the Reach: Linking Local and RC
Activities with HRSA/MCHB National Centers,
had a goal of creating stronger linkages between
regional collaboratives and HRSA sponsored
national centers. We heard presentations from the
National Center for Medical Home, National
Coordination and Evaluation Center for Sickle Cell
Disease, National Health Care Transition Center,
Data Resource Center for Child and Adolescent
Health, and National Center for
Family/Professional Partnerships.
The meeting also included presentations
from each region on their medical home,
transitioning, evaluation, and consumer engagement
activities.
The meeting concluded
with a discussion on increasing linkages with
HRSA's national centers, how the RCs may be able
to use a chronic disease mode to further promote
care of rare diseases across the lifespan, and how
RCs could move from a primary focus on newborn
screening to a broader focus on genetics and the
medical home. As we hear more
from these national centers, we will be sure to
share information about their resources and
opportunities for collaboration with our region.
If
you are interested in learning about activities in
other Regional Collaboratives, or with other
national partners, we encourage you to read the
NCC's quarterly newsletter, the NCC
Collaborator. Each issue
includes updates from each RC as well as a focused
article on interregional or national current
events in genetics. You can
access the current and all past issues of the NCC
Collaborator here. Many
thanks to the NCC for supporting this valuable
publication!
Finally,
if you haven't been to our website lately, we
invite you to visit http://r20.rs6.net/tn.jsp?llr=ofyp6xbab&et=1106321522649&s=9723&e=001txmwdIuKId82eTq30SBxOxxzyjKGh55gxnKnnKorqQtlcWpBmMOYssyxfQEVRiN0fSl4vwSfFf13chZxAc76KikPt3dwrIUQPW7H3lGAtasbwIdrdhWG-8Xemyrc40mmyh-Cozg2op8=.
With the technical support of the Western
States Genetics Collaborative, we've streamlined
and updated our website content to make finding
information easier for you. We
are still developing content for some of the pages
and welcome any suggestions you can
provide. In July, we will
present a demonstration of this new website during
the monthly NCC PD/PM conference call.
So
now we're looking forward to seeing many of you in
Denver July 12-14 to review our projects and
programs, set future priorities, and hear from
national leaders on health care reform, the work
of GSB and the Secretary's Advisory Committee on
Heritable Disorders in Newborns and Children, and
other topics of interest to all of us.
Please find me to say hello during the
meeting. I'm anxious to hear
your news!
Warm
regards,
Celia I.
Kaye, M.D., Ph.D.
Project Director,
MSGRCC