Work Groups

WSRGN CURRENT PROJECT ACTIVITIES

1. Centralized Advisory Program for the Authorization of Genetic Services (CAPAGS)
This work group includes genetic specialists and family advocates from the different states and territory. This project evolved from our original Reimbursement Work Group. The goal of the CAPAGS project is to develop a centralized review program to assist insurance companies by providing expert opinion on authorizing genetic services and/or testing.

2. CPT-1A Arctic Variant Project
Led by Dr. Dave Koeller, a metabolic geneticist from the Oregon Health and Science University, this project seeks to improve newborn detection, management, and long-term follow-up of children with carnitine palmitoyl transferase deficiency, type 1 (CPT-1A) arctic variant. This work group includes representation from the Alaskan Native Health organizations, Alaskan Native tribal groups, and the Alaska Department of Health.

3. Evaluation Activities
Since 2005, the Western States Regional Genetics Network (WSRGN) has incorporated a program planning and evaluation cycle as a key ingredient to assess regional genetic needs, plan and prioritize activities, and assess outcomes of grant activities.

4. Family Advocates Work Group
The Family Advocates Work Group includes family advocate leaders from the six western states and Guam. Members of the work group represent family organizations in their state, and serve as a liaison between the WSRGN and all families in the region.

5. Family Health History Project
The goal of this project is to develop and pilot an interactive family health history tool that can be used as an app for tablets and smart phones. This tool will be geared towards family history questions leading to referrals and resources for Hereditary Breast and Ovarian Cancer (HBOC) and Hereditary Nonpolyposis Colorectal Cancer (HNPCC), then move potentially into Familial Hypercholesterolemia (FH) and other cardiovascular hereditary diseases. This project is currently on hold pending additional funding.

6. Telemedicine and Outreach Activities
The WSRGN is increasing access to genetic services by organizing and funding outreach and telegenetics clinics in Guam, Hawaii, and Alaska. As part of these activities, the outcomes of the genetics visits are evaluated through surveys, reimbursement data, and time and costs analyses.

7. Translating Genomic Information
The goal of this project is to translate genomic information into practical and appropriate language for family advocate organizations, public health professionals and primary care providers. Members of this work group organize presentations and documents around genomic topics of interest. This group continues to help translate materials when requested.

8. Affordable Care Act Webpages
The WSRGN created and devoted a website to a family-friendly explanation of the ACA. This website has pages on what the ACA is, benefits, and how to obtain information about ACA based upon life course model and developmental milestones. Annually, there are hundreds of page views of the ACA pages in the Western states and throughout the nation. This reflects the interest in learning about the impact and specifics of the ACA. Anecdotally we have heard from many providers and family advocates who use and share the website with their patients or clients. These webpages are maintained and updated with new information and material as needed.

9. Affordable Care Act Family Survey
The WSRGN administered a survey in Hawaii that was modeled after similar surveys developed by NEGC and NYMAC. This online and paper based survey of families of children with special health needs asked about essential health benefits and financing of health care. The results of the survey will provide both a regional and national level understanding of current status of health care and insurance needs for population living with genetic conditions. Other states may consider administering the survey.

10. Telegenetics Education and Training Project
This inter-regional project was developed to offer training about telegenetics in order to increase understanding of and uptake of use of telemedicine among genetic specialists. The WSRGN helped create the foundation for increasing access to genetic services by training new providers to incorporate telemedicine as part of routine practice. This effort has been expanded to other regions that are now offered this training. Two trainings have been held as of summer 2016 with three additional trainings scheduled for 2016.

11.Genetic Services Assessment by State Title V Leaders
Members of the WSRGN stablished contact with each state Title V program with the plans of seeking their perceptions of current status of genetic services using Genetic Systems Assessment survey. Assessment was completed in Hawaii in September 2015 after a series of two in-person focus groups were held and analyzed. Focus groups are planned to be held in 2016 via videoconference for other states in the region starting with Washington. Families in our region will benefit when programs are planned based upon knowledge shared by Title V leaders who know what is happening in their states regarding access to genetic specialty care within or outside of medical homes.

12.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 currently under the management of the WSRGN, which provides ongoing expert updates and national distribution of these and additional fact sheets. The website has 20,000 unique visitors per month. The English and Spanish language fact sheets were recently updated.

13. Newborn Screening Survey
In order to get a better understanding of parents’ opinions on newborn screening for later onset disorders and preferences for when/how to notify parents the risks related to a positive newborn screen for later onset conditions, the WSRGN developed a survey for parents. This survey was distributed at the Hawaii New Baby Expo in May 2016, Seattle Savvy Family Expo in March 2017, and California Kids Expo in April 2017. 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.

14. Genetic Services Outcomes
With many regional and national efforts to document and validate the benefit of genetic services, this work group disseminates and investigates current practices related to measuring outcomes and documented frameworks for approaching to measure outcomes. Ultimately, this work group hopes to help prove the worth of genetic services for families and improve reimbursement.

WSRGN PAST PROJECT ACTIVITIES

1. Outcomes and Data Work Group
From 2005 through 2009, this group of state public health genetic services and newborn screening professionals, family representatives, medical geneticists, genetic counselors, and program evaluators explored strategies for measuring and monitoring outcomes of genetics services.

2. Reimbursement Work Group
In 2009, WSRGN stakeholders prioritized reimbursement of genetic services as a top priority for families in the region. From 2010 through 2012 a work group of diverse stakeholders researched and distributed information about this topic at the state, regional and national levels.

3. VLCADD Project
Members of this work group studied the data collected from newborn screening for children who were screen positive for very long chain acyl-CoA dehydrogenase deficiency (VLCADD). The overall goal of this project was to examine the relationship between clinical presentation and treatment response.

4. Adolescents, Young Adults, and Genetic Health Conditions
In 2012, stakeholders in the WSRGN identified addressing the needs of adolescents and young adults with or at risk for genetic conditions as a top priority. The group researched current adolescent transition activities in the region for all youth with special health care needs. We are now in the process of studying health needs of young adults and teens with genetic conditions. This group completed its work Fall 2015 with a report from the UNITY-GC Survey. This online and paper based survey of teens and young adults with genetic conditions assessed needs relating to health insurance, barriers to care and frequency of specialty provider visits. The results are available here. Family advocate organizations and state programs can use findings from this report to plan interventions for adolescents in the health care systems.