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1. Family Work Group
The Family Work Group is co-facilitated by the WSGSC’s family consultant, Becky Adelmann and the WSGSC evaluator, Jacquie Stock. The Work Group has representatives from each of the states and Guam in the WSGSC and includes members from state Family Voices and Family to Family Health Information Centers.
Family representatives in the Western States Genetic Services Collaborative are currently reviewing the following information and resources using the “ Quality Presentation Toolbox” developed by the Genetic Alliance. Read more.....
2. 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.
3. Outcomes and Data Work Group
The Outcomes and Data Work Group is comprised of state public health genetic services and newborn screening professionals, family representatives, medical geneticists, genetic counselors, and program evaluators. This Work Group develops, evaluates, and implements activities related to the outcomes for genetic services and related activities in the WSGSC.
Password protected pages for Collaborators
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:
4. Evaluation Work Group (no documents yet posted)
Evaluation activities to assess the WSGSC and its activities are developed by the Evaluation Work Group. Data obtained from the evaluations are used fed back to the project to improve the functioning of the WSGSC and the project 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.