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MSGRCC Annual Meeting!
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Greetings!
Although
the frost is not yet on the pumpkins, the pumpkins
themselves are ripening in Mountain States
gardens. Soon we'll be able to use them in
Halloween decorations and wonderful recipes for
pumpkin bread and pumpkin pie. Where did the
summer
go? |
| SACHDNC
Meeting |
|
MSGRCC
staff said good-bye to summer at the September
22-23 meeting of the Secretary's Advisory
Committee on Heritable Disorders in Newborns and
Children (SACHDNC) in Washington, DC. This was an
action filled meeting, beginning with an
announcement by out-going chair Rod Howell that
Health and Human Services Secretary Kathleen
Sebelius adopted the recommendation of SACHDNC
that Critical Congenital Heart Disease (CCHD) be
included on the recommended uniform panel for
newborn screening. The recommendation from SACHDNC
received additional review by the Interagency
Coordinating Committee on Screening in Newborns
and Children before being accepted by Secretary
Sebelius. Point of care screening for
CCHD is accomplished through pulse oximetry
screening during the newborn period. Our states
will now consider this recommendation and
determine when and how to implement it on a state
by state basis.
Much
of the SACHDNC meeting this time was devoted to
reflections on the progress of newborn screening
since the committee was chartered in 2003. These
included adoption of the original uniform panel of
29 core disorders for newborn screening by all
states and territories, improvement in follow-up
for hearing loss from 52% to 69%, development of
the evidence review process for newborn screening
disorders, and review of numerous work products of
SACHDNC. Sharon Terry from the Genetic Alliance
updated the group on the launch of Baby's First
Test (http://r20.rs6.net/tn.jsp?llr=ofyp6xbab&et=1107905631693&s=7901&e=001jxE0h5Q5VBer8XOZWrhjN6hSwfYLWibQ6b_SaSrCWTakTYmkS0W3vATZ83msx76wkdTkWk0i_Yjq4IGl08xvZjX7FH1IIE_AOM6Luw5uZE1N1y69ylI8JA==),
the new website for the Newborn Screening
Clearinghouse, and Mike Watson provided a progress
report for the Newborn Screening Translational
Research Network (NBSTRN), which is proceeding
with the development of a virtual repository of
dried blood spots and supporting states as they
pilot additional disorders for newborn screening.
Barry Thompson updated the group on the activities
of the Regional Collaboratives and the National
Coordinating Center, including development of the
ACT sheets and follow-up measures for disorders
identified by newborn screening, as well as
reports on medical home, telemedicine and
transition projects. As you know, MSGRCC is very
active in all of these areas. Finally, each
subcommittee (laboratory standards and procedures;
education and training; follow-up and treatment)
reviewed its charge and activities over the past
several years and suggested new activities for the
coming years. After recognizing Rod Howell for his
remarkable service to all of us and to all
children, Joseph Bocchini, M.D. was welcomed as
the incoming SACHDNC chair. You can learn more
about Dr. Bocchini and other new members of the
SACHDNC here. |
| Genetic
Alliance 25th Anniversary Celebration |
|
|
While
in Washington, DC, we also had the pleasure of
attending the Genetic Alliance 25th Anniversary
Celebration at the National Geographic Society.
The event honored innovators from the genetics,
health and advocacy community, and our own Joyce
Hooker was included as an honoree. To see the
exhibit honoring Joyce, please visit this link. |
| Newborn
Screening Workforce Survey |
|
|
The
New England Genetics Collaborative (NEGC), the
University of New Hampshire Survey Center, and the
National Coordinating Center for the Regional
Genetic and Newborn Screening Service
Collaboratives (NCC) have just launched a national
survey examining the newborn screening workforce.
The MSGRCC has partnered with them to distribute
the survey in our region and we hope you'll take a
few minutes to complete it here: http://r20.rs6.net/tn.jsp?llr=ofyp6xbab&et=1107905631693&s=7901&e=001jxE0h5Q5VBc1gNZ_GqAjIa4z1jcvkhOM7dpYw_VNFur7odnw50fmb-JyHVpDv5ermkVpS1X_hK7qv1MnZHYM1Hlo6zi7EAeSds2oBevMaSj0F8OirBSF9DdMR6CDt7teL2aumIZy_wb2eFD0uLxDMQ==.
The survey invitation, with background
information, is below.
INVITATION
TO PARTICIPATE
In
many states the number of recommended newborn
screens are being expanded. This has
implications for the number of patients seen in
your practices and the coordination of care for
these patients. We need your help to
understand how these changes will affect your
practice.
Last
year, the New England Genetics Collaborative
conducted in-depth interviews with providers who
treat patients with metabolic disorders
identifiable by newborn screen in the New England
region to examine the depth and scope of care
provided, coordination of care, and provider
perceptions about the impact of expanded newborn
screening for metabolic disorders.
Highlighted within our finding were:
- Care coordination needs improving.
Providers are engaging in a variety of roles
with patients and their families.
- Extra-care activities, such as educating
families and working with insurers, are time
consuming and rarely reimbursed.
- Expanded screening will likely exacerbate
these issues without some fundamental changes to
how care is delivered.
We
invite you to view the full report at: http://r20.rs6.net/tn.jsp?llr=ofyp6xbab&et=1107905631693&s=7901&e=001jxE0h5Q5VBfYJKY6upgT3hiSuuMZ4P0tX2sF1Lc8PVKFyE-cnp66EUygZ8GOXQYyJbF-hOqSPzNp_ImiOsUUN0fZKwo8EoBQ13hkPzWq0QZepvtqbquS6XrFFPCnRJLTeURnKD0tRz1362b2oOe72mXajdZ7iyHf5mTuloETlz6HmdZqoDnur_MPCWMQJYUXmyTlwv-00sQI6U04xMh9wQ==
These
findings are only the first step in collecting
empirical information on our field that will be
valuable to the current and ongoing policy
discussions affecting all of us. Now we are
requesting your help.
To
better understand what providers face nationally,
we are asking you to complete a short on-line
national survey regarding your experiences caring
for children with metabolic conditions. The
survey was developed with the University of New
Hampshire Survey Center with funding from the
National Coordinating Center for the Regional
Genetic and Newborn Screening Service
Collaboratives (NCC). You can access the
survey by clicking on the following link or by
copying and pasting it into the URL line of your
browser: http://r20.rs6.net/tn.jsp?llr=ofyp6xbab&et=1107905631693&s=7901&e=001jxE0h5Q5VBfYJKY6upgT3hiSuuMZ4P0tX2sF1Lc8PVKFyE-cnp66EUygZ8GOXQYyJbF-hOqSPzNp_ImiOsUUN0fZKwo8EoBQ13hkPzWq0QZepvtqbquS6XrFFPCnRJLTeURnKD0tRz1362b2oOe72mXajdZ7iyHf5mTuloETlz6HmdZqoDnur_MPCWMQJYUXmyTlwv-00sQI6U04xMh9wQ==.
Thank
you for taking time out of your busy professional
lives to help impact future discussions and policy
directions in genetic medicine.
For
questions on this survey please
contact:
Robert
J. McGrath, PhD
University
of New Hampshire
Department
of Health Management and Policy
(603)
862-5047
Robert.McGrath@unh.edu |
| NCHPEG
Poster Presetation |
|
|
 Also in September, Liza
Creel, MSGRCC Project Manager, presented a poster
at the 14th Annual Meeting of the
National Coalition for Health Professional
Education in Genetics. The
poster, titled Use of Telemedicine to Deliver
Genetics Education in Two Regional Genetics
Collaboratives, described two telemedicine
projects, one in the MSGRCC and one in the
Heartland Region, that are utilizing telemedicine
to deliver both clinical genetic services and
professional education opportunities.
The presentation authors were Liza Creel,
MPH (MSGRCC), Shobana Kubendren, MS (University of
Kansas School of Medicine - Wichita), Susan
Landgren, MS (Billings Clinic), Celia Kaye, MD,
PhD (MSGRCC), Joyce Hooker (MSGRCC), and Brad
Schaefer, MD (University of Arkansas for Medical
Sciences).
|
| MSGRCC
Announces Associate Project Director Position
Opening |
|
|
I
am happy to announce our recruitment of an
associate project director for MSGRCC.
I have had the pleasure of serving as
MSGRCC Project Director for the past three years,
and I will continue in this role going
forward. At its July meeting,
our MSGRCC Advisory Council identified a need to
broaden our leadership group.
We seek an additional leader to reach out
to our membership, and to plan and implement
policies and programs. You can
find the job description for this position at http://r20.rs6.net/tn.jsp?llr=ofyp6xbab&et=1107905631693&s=7901&e=001jxE0h5Q5VBe_wVo0ZHHY1pqYCSexjp54ZRBL4vHoX3-6eEBzi7IPc-mjfdm-d3RuSSOKM0esm5M-fDp-7yUX4bGNlJrd7KfeGe9a1kKXzTFCTuPlN0YuqeVtKNI6sLZJ.
Please review it, see if it applies to you,
and consider whether you or a colleague would like
to apply. We're looking for
your ideas, energy, and commitment to our
region.
As
the days grow shorter and the evenings cool, our
workgroups are busy with the plans they made at
the MSGRCC annual meeting in July. Next month
we'll include minutes from the workgroup meetings
with this message, plus updates from each of them.
Meanwhile, enjoy some cider and
doughnuts!
Warm regards,
Celia I.
Kaye, M.D., Ph.D.
Project Director,
MSGRCC
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