The Hawaii Chapter of Family Voices and the Hawaii Family-to-Family Health Information Center is features in this week’s Family Voices newsletter! To read the Family Voices newsletter, go to: http://www.familyvoices.org/pub/fc/FC_2009-02-20.pdf

The Evaluation of Genomic Applications in Practice and Prevention (EGAPP) Working Group, supported by the National Office of Public Health Genomics at the Centers for Disease Control and Prevention, recently released new evidence-based recommendations on the validity and utility of three genetic tests currently being used in clinical practice.

The new recommendations address:

• Tumor gene expression profiling in patients with breast cancer
• UGT1A1 genotyping in patients with metastatic colorectal cancer who are treated with Irinotecan
• Genetic testing for Lynch syndrome in newly diagnosed colorectal cancer patients to reduce morbidity/mortality in relatives.

The recommendations are published in the January 2009 issue of the journal Genetics in Medicine. To view the recommendations you can also visit the EGAPP website at: http://www.egappreviews.org/default.htm

At its 11/24/08 meeting, the committee reviewed the nomination of spinal muscular atrophy (SMA) to be added to the Newborn Screening “uniform” panel. The committee adopted the recommendation of the Internal Nomination and Prioritization Workgroup: “The Internal Nomination and Prioritization Workgroup \recommends no evidence review at this time and further recommends a nominator to conduct prospective pilot studies in one or more traditional public health laboratories…” ACHDNC meeting summaries are available on the committee’s website, http://www.hrsa.gov/heritabledisorderscommittee/meetings/default.htm

The Center for Telehealth and e-Health Law (CTeL) is sponsoring a webinar about credentialing for telehealth on Monday, February 23, from 12:00-1:30pm EST.
For more information, go to: http://www.telehealthlawcenter.org/?c=125&a=1970

Free Webinar: Wednesday, February 18, 2009 12:00pm-1:00pm ET, featuring The Western States Regional Genetics Services Collaborative (WSGSC)

Join Kerry Silvey and Sylvia Au, WSGSC co-directors, as they discuss: 1) The region’s work in the implementation and evaluation of a regional Practice Model to improve access to specialty genetic services for children with heritable conditions living far away from a comprehensive genetics and metabolic centers;

2) Activities to increase the capacity of collaborating states’ and territory’s public health agencies to perform genetic services assessment, policy development, and assurance functions; and 3) How family representative involvement has been integral to the success of the Collaborative activities.

The Western States Regional Genetics Services Collaborative (WSGSC) is a HRSA-funded regional project that seeks to coordinate and increase access to genetic services for children with disorders detected by the newborn screening blood test, birth defects and with other genetic disorders. The participating states and territory in the WSGSC are: Alaska, California, Guam, Hawai`i, Idaho, Oregon, and Washington.

Presenters:

Sylvia Mann Au, MS, CGC – Genetics Coordinator, Hawai’i State Genetics
Kerry Silvey – Public Health Genetics Specialit, Oregon Center for Children & Youth with Special Health Needs, Oregon Health & Science University

Sign up here: http://www.geneticalliance.org/webinars