from the Project Directors
Celia I. Kaye, MD, PhD & Kathryn Hassell, MD
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It's hard to believe our
work-groups met face to face less than a month ago! Time seems to be
flying by as we enjoy beautiful weather and summer vacations.
We are still working
on selecting a new MSGRC Project Manager, and although Liza will be a
hard act to follow we have a wonderful selection of applicants to choose
from. Be on the lookout for updates!
MSGRC 2012-2013 Annual Meeting
Eighty active MSGRC
members came together July 10-12 in Denver for MSGRC workgroup meetings
and time to catch up with each other. We enjoyed the away time at the
hotel and the good food, but most important was our time together to
share our personal stories, catch up on work events in our various
states, and unwind over dinner.
Every MSGRC workgroup met to
discuss on-going activities and continue development of their evaluation
plans. The Telemedicine, Emergency Preparedness, and Newborn Screening
workgroups continued to share information on projects in their various
states and made plans to continue work on their grant funded activities.
The MSGRC Advisory Council met to review progress on the first year of
this grant cycle and discuss evaluation activities for MSGRC and the
National Coordinating Center for the Regional Collaboratives (NCC).
Medical Home workgroup held its second face-to-face meeting. They
reviewed progress on the newly funded Parent Partner project, which is
training parents of children with special healthcare needs to work in
primary care offices to support children and families with special
needs. Brad Thompson is the director of this exciting new project. Laura Pickler
reported on her project, Improving Medical Homes and Transition
Outcomes for Youth Served in IMD Clinics. In this final year of funding,
Dr. Pickler will complete data collection and analysis
of patients with genetic disorders or inborn errors of metabolism who
are transitioning to an adult model of care. At their request,
work-group members participated in a webinar on aspects of the
Affordable Care Act, presented by Meg Comeau of the Catalyst Center.
Health Information Technology Workgroup held its first meeting, an open
forum for all interested MSGRC members to discuss priorities in health
information technology for MSGRC. The purpose and mission of this
workgroup were discussed, and then the group engaged in a discussion,
facilitated by Donna Williams, of potential benefits
and risks of information technology for children and adults with special
healthcare needs. From among numerous ideas shared by the group, MSGRC
staff will propose three goals for this workgroup, and then workgroup
members will describe a scope of work for each goal. At a future
meeting, workgroup members will prioritize these goals and identify
timelines for work in the current year.
Interest Group discussed the highly anticipated release of the National
Heart Lung and Blood Institute's (NHLBI's) Expert Panel Report on the Management of Sickle Cell Disease
and possible strategies for dissemination throughout the region. In
addition to discussion on the new guidelines, work is underway to
identify the primary and specialty providers known to State newborn
screening programs who care for children with sickle cell disease. These
pediatric providers can in turn contribute information about where
youth receive care as they enter adulthood, so that contact can be made
with those adult practices. One goal of this process is to facilitate
dissemination of the NHLBI guidelines for the management of children and
adults with sickle cell disease. Successful transition from the
pediatric to adult-oriented care will be critical to sustain
implementation of the new guidelines across the lifespan and can drive
collaboration around recommended health care goals.
Next Steps for the Project Team
Now that this wonderful
meeting is behind us, the MSGRC Management Team will focus on recruiting
a new project manager. We'll also continue to monitor our projects, and
Sharon Homan, our evaluator, will complete logic
models and evaluation plans for each work-group and project. This should
keep us busy for the rest of the summer!
We hope you all find
some time to enjoy these warm days. Please spend some precious moments
with family and friends, and don't forget to send us a picture of
yourself enjoying some time away from work.
MSGRC Project Coordinator, Donna Williams,
has a new found love for orchids and unusual plants. Here are some
pictures of beautiful plants she nurtured from cuttings to adults. The
plants were gifts from her colleague and friend, MSGRC NBS Co-Chair Susan Tanksley.
I. Kaye, M.D., Ph.D.
Kathryn Hassell, M.D.
Mountain States Genetics
Regional Collaborative Center | 8501
North MoPac Expressway | Suite
300 | Austin | TX |