Project Activities

Telegenetics Training Project
The WSRGN supports providers to implement telegenetics in their practice to increase access for families.  Read more…..
Telegenetics Service

Goal: Increase the number of families receiving services via telegenetics.   Read more…..

Genetic Service Outreach
The WSRGN is increasing access to genetic services for medically underserved populations by coordinating and funding outreach services in Guam, Hawaii, and Alaska.  Read more…..
Family Advocates Services Project
The Family Advocate Leaders Work Group includes family advocate leaders from the six western states and Guam. This project will have the family advocates, genetics specialists, and public health providers identify existing resources and develop new resources to help the Family to Family Health Information Centers and Family Voices’ staff refer families to the appropriate genetic resources and services.  Read more…..
Centralized Advisory Program for the Authorization of Genetic Services (CAPAGS)
This project seeks to develop a centralized review program to assist state Medicaid Directors and other third party payers by providing objective expert recommendations about requested genetic services and/or testing.  Read more…..
Minority Genetic Counselor Mentorship Project
The WSRGN is developing a mentor/mentee program to expand the number genetic counselors from ethnic minority backgrounds. The program will support current genetic counselors and students interested in becoming genetic counselors.  Read more
CPT-1A Arctic Variant Education Project
This project seeks to improve newborn management, and long-term follow-up of children with carnitine palmitoyl transferase deficiency, type 1 (CPT-1A) arctic variant. Educational aids are being developed to help families, primary care providers, and community leaders understand the treatment and management for newborns and children with CPT-1A arctic variant.  Read more
Newborn Screening Parent Fact Sheet Maintenance, Development and Distribution
A previous project that involved members of the WSRGN created the base website and initial fact sheets related to information about conditions detected via newborn screening for http://www.newbornscreening.info. This website is now managed by the WSRGN, which provides ongoing maintenance of existing and development of new fact sheets. The fact sheets are in English and Spanish. We are currently working on additional features that include videos and interactive documents to help families learn about disorders detected by newborn screening.  Read more
Just in Time Education Resources
This inter-regional project seeks to train genetic specialists to use telegenetics in their practice. The training consists of self-paced on-line modules, webinars, and an one day in-person session. CMEs and CEUs are offered for the training. The training is done in partnership with the HRSA funded Southwest Telehealth Resource Center at the University of Arizona. Training sessions are held at about once per quarter.  Read more
Newborn Screening Community Engagement
The WSRGN initiates activities when needed In order to get a better understanding of parents’ opinions on newborn screening in the region. For example, we recently completed a survey of parental attitudes towards newborn screening for for later onset disorders and preferences for when/how to notify parents the risks related to a positive newborn screen for later onset conditions. Findings from these surveys will be used by regional and possibly national NBS policy makers to develop appropriate policies as to when to notify parents of risks related to a positive newborn screen for later onset conditions. Read more….

HRSA funding of Regional Genetics Networks (RGNs) requires Networks to implement program evaluation that contributes to continuous quality improvement (CQI), and to provide data on HRSA program objectives and specified  baseline data.