Work Groups

WSGSC WORK GROUPS

1. Family Advocates Work Group

The Family Advocates Work Group includes family advocates from the six western states and Guam. Members of the work group are family leaders, representing family organizations in their state, and serve as a liaison between the WSGSC and all families in the region. Family advocates were instrumental in planning the WSGSC and partner at all levels in Collaborative activities, including participation on the Steering Committee, in evaluation, and in the annual Regional Summit. Family advocates, as with other stakeholders, volunteer for participation in special priority projects and work groups. When possible, state Family Voices and Family to Family Health Information specialists serve as WSGSC representatives. Barbara Chambers and Kristine Green are current Stakeholder Leads of the work group. Jacquie Stock is the Collaborative Lead for the work group.

Family Advocate Role and Responsibilities

2. Reimbursement of Genetic Services Work Group

In 2009, attendees at the WSGSC annual Regional Summit identified financing of clinical genetic services as a high priority need within the region. Regional stakeholders including public health genetics leaders, family advocates, and genetic specialists volunteered to form a work group to identify top financing needs and develop an action plan for addressing those needs. To date, work group members have completed a qualitative survey of state Medicaid coverage in the region and partnered with the University of Washington Center for Genomics and Healthcare Equality to sponsor a regional meeting addressing Medicaid coverage of genetic services. The work group is currently compiling meeting proceedings, will disseminate them, and meet to plan continued activities. This work group is being led by Stakehold Lead Debra Lochner Doyle and Staff Lead Jacquie Stock.

3. Medical Foods Work Group

The Medical Foods Work Group is made up of clinicians, public health staff, and family advocates from the WSGSC. It is currently assessing the needs, resources, and legislation regarding reimbursement of medical foods within the region, and will identify specific activities to help improve reimbursement of medical foods and formulas. The Medical Foods Work Group is being led by Stakeholder Lead Michelle Maeda and Staff Lead Sarah Scollon.

4. VLCADD Work Group

Consisting of metabolic geneticists, an epidemiologist, and newborn screening (NBS) program and laboratory staff, the 12 member workgroup was tasked with studying data collected from NBS for children who were screen positive for very long chain acyl-CoA dehydrogenase deficiency (VLCADD). The overall goal of this collaborative project is to examine the relationship between clinical presentation and treatment response. More specifically, the work group plans to examine the correlations between treatments that were initiated, genotype, metabolite profile, and clinical phenotype in infants who screened positive and/or were identified with VLCADD through NBS. It is hoped that information gathered from the analysis of the compiled NBS data, from all of the partner states, will help lead to the development of more effective evidence-based treatment standards for VLCADD. This work group is being led by Stakeholder Lead Dr. Lawrence Merritt and Staff Lead Arthur Yu.

5. Medical Home/Primary Care Provider Work Group (no documents yet posted)

Primary care providers from each of the states and Guam are represented on the Medical Home/Primary Care Provider Work Group. The Work Group is fortunate to be led by medical home champions, Louise Iwaishi (Hawaii) and Tracy Trotter (CA). Activities chosen by the Work Group are developed and implemented to help primary care providers incorporate genetics information and activities into their practice.

6. Outcomes and Data Work Group

The Western States Genetic Services Collaborative (WSGS) Outcomes and Data Work Group formed in 2006 at the Collaborative annual Regional Summit in Portland, Oregon. The group is comprised of state public health genetic services and newborn screening professionals, family representatives, medical geneticists, genetic counselors, and program evaluators from the six Western states. The group’s initial purpose was to develop a list of desired outcomes of genetic services that can be used to monitor and study the impact of genetic services on individual, family and population health. The group’s long term purpose is to explore strategies for implementing monitoring of select outcomes within the Western States Region.

Work Group Products:

7. Evaluation Work Group

The goal of WSGSC evaluation is for the Collaborative and the Maternal Child Health Bureau to understand the efficacy and impact of the Collaborative. The WSGSC reports evaluation findings to the Maternal Child Health Bureau and uses findings to enhance genetic services in the region. A logic model, developed by the Evaluation Group, guides the evaluation.

Work Group Products:

NATIONAL METABOLIC AND GENETIC CONDITIONS TRANSITION WORK GROUP ACTIVITIES

The National Metabolic and Genetic Conditions Transition Work Group has been formed by the seven Genetics and Newborn Screening Service Regions funded by the federal Health Resources and Services Administration/Maternal and Child Health Bureau (go to www.nccrcg.org for information about all the regions and the National Coordinating Center) to represent adolescents and young adults with special health care needs, their families, pediatricians and medical specialists.

Its vision is to make transition from pediatric medical care to adult medical care as smooth as possible by providing guidelines, evaluation of readiness, forums for sharing experiences, and information on health insurance, guardianship and advocacy issues.

Chairs: Susan Waisbren, PhD and Louis E. Bartoshesky, MD, MPH, MALS

Public website: http://www.wadsworth.org/newborn/nymac/intran_wrkgrp.html
Password protected website for Work Group members: click here to enter

For information on entering the password protected section or with problems contact Pauline Mui at pauline@hawaiigenetics.org.