Archive for January, 2010

Jan 28 2010

MCH Public Health Leadership Institute

Published by under Announcements

HTML clipboardThe Maternal and Child Health-Public Health Leadership Institute (MCH-PHLI) is now accepting applications for Fellows for the 2010-2011 year.

Through this program, Fellows receive 10 days of intensive leadership development, ongoing personal executive coaching, and feedback on seven of the leading psychological assessment instruments used in top leadership development programs today. The curriculum prepares leaders to advocate for policy issues, think critically, analyze situations and data around MCH issues in public health, to speak to the media, and to build effective teams and partnerships. Fellows will learn negotiation skills, how to manage difficult conversations, how to create emotionally intelligent workplaces, cultural flexibility and competence.

This program is targeted to mid-to-senior level leaders in MCH Title V and Family organizations, as well as non-profits who serve MCH audiences. Each Fellow completes a Personal Leadership Project that will demonstrate impact in their area of MCH. Generous travel scholarships are available to Fellows in this first cohort. Learn more and apply at www.mchphli.org. Applications close February 15, 2010.

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Jan 28 2010

Genetic Metabolic Dietitians International 2010 Conference

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HTML clipboardThe Genetic Metabolic Dietitians International (GMDI) 2010 conference will be held in Baltimore, Maryland on April 15-17, 2010. The primary focus of this conference is treatment for inborn errors of metabolism through dietary intervention. It is an appropriate forum for metabolic physicians, metabolic dietitians, fellows, genetic counselors, specialized nurses, and anyone involved in the long term follow up of individuals diagnosed with an inborn error of metabolism, either after having a positive newborn screen, or after becoming symptomatic. Further information about the program and registration can be found on the GMDI website: www.GMDI.org.

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Jan 28 2010

Federal Advisory Committee Recommends SCID for Universal Newborn Screening

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HTML clipboardIn a historic vote on January 21, 2010, the Secretary’s Advisory Committee for Heritable Disorders in Newborns and Children (ACHDNC) unanimously agreed to recommend the addition of Severe Combined Immunodeficiency (SCID) to the uniform newborn screening panel. The ACHDNC adopted a list of 29 recommended conditions in September 2005. Since that time, SCID is the first condition to be added to this list for inclusion into mandatory newborn screening conducted by state public health programs.

SCID is a group of disorders characterized by the absence of an immune system, causing infants with SCID to develop recurrent infections, leading to death in early childhood. SCID affects a minimum of one in 100,000 newborns; however, some studies estimate that the actual number is closer to one in 40,000. Treatment in the first months after birth can prolong life and prevent infections. Wisconsin and Massachusetts both developed cost-effective methods for universal screening for SCID, and a number of other states have started to train their laboratory personnel to start screening for SCID.

Dr. Rebecca Buckley of Duke University Medical Center published the first article showing the effectiveness of early bone marrow transplantation as a treatment for SCID in 1999 in The New England Journal of Medicine. After working for 13 years to get SCID added to the recommended panel, the vote came as “a dream come true.”

The Chairman of the ACHDNC, Dr. R. Rodney Howell, noted that “[the Advisory Committee] has carefully reviewed the detailed, updated evidence review for SCID and related T-lymphocyte deficiencies and found the condition(s) ready to be added to the uniform and secondary panel. … The Advisory Committee, however, understands that there will be additional work from the NIH, HRSA and the CDC to be reported back to the Committee as this newborn screening proceeds.”

The ACHDNC was established in February 2003 to advise the Secretary of the U.S. Department of Health and Human Services regarding the most appropriate application of universal newborn screening tests, technologies, policies, guidelines and standards for effectively reducing morbidity and mortality in newborns and children having, or at risk for, heritable disorders. There is currently a formal process for individuals or organizations to nominate a heritable disorder to be considered for inclusion in the recommended uniform screening panel (http://www.hrsa.gov/heritabledisorderscommittee/nominate.htm).

“This recommendation by the [Advisory] Committee is significant for both newborn screening and for the evidence-based process for decision making,” declared Sharon Terry, president and chief executive officer of Genetic Alliance, who serves as a liaison on the ACHDNC. “The recommendation includes surveillance, education and quality control, to be contributed by the National Institutes of Health, Health Resources and Services Administration and Centers for Disease Control and Prevention, and thereby supports the development of a systems approach in newborn screening.”

To date, six conditions have been brought to the Advisory Committee: Fabry Disease, Krabbe Disease, Niemann-Pick Disease, Pompe Disease, Severe Combined Immunodeficiency (SCID), and Spinal Muscular Atrophy (SMA). Thus far, only SCID has been recommended for addition to the uniform screening panel. By law, the Secretary of Health and Human Services must respond to the recommendation within 180 days.

Vicki Modell, co-founder of the Jeffery Modell Foundation, stated that “[the] unanimous vote to add SCID to the National Newborn Screening Core Panel was a milestone victory. We thank the Committee for their positive decision on behalf of all the babies with SCID that we lost, the babies today who have hope, and for all the future babies yet to be born, who will have a really good chance at life.”

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Jan 19 2010

APHA Genomics Forum Call for Abstracts

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HTML clipboardThe 2010 American Public Health Association’s (APHA) Genomics Forum is open for submission of abstracts related to the 2010 conference theme, “Social Justice: Public Health Imperative.” The Genomics Forum will be held during APHA’s Annual Meeting on November 6-10 in Denver Colorado. Abstracts are due on February 3, 2010.

For more information, on the Genomic Forum, visit www.genomicsforum.org. For more information on submission of abstracts, visit: http://apha.confex.com/apha/138am/genf.htm.

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Jan 05 2010

National Coordinating Center Newsletter – December 2009

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HTML clipboard The National Coordinating Center (NCC) has just published the December issue of their newsletter, the NCC Collaborator. It contains an article about how the WSGSC disseminates information as well as other interesting pieces written by different regional collaboratives. To view the newsletter, go to: http://www.nccrcg.org/newsletter/NCC-Collaborator-current.pdf

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