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September was a productive month both regionally and nationally with many projects and activities coming to completion. These activities will lay much of the groundwork for the future of the regional collaboratives. We encourage all of our members and stakeholders to read on and please share with colleagues!
ACA Policy Brief
In December 2013, New England Genetics Collaborative (NEGC) produced a regional policy brief to better understand the gaps in coverage that may exist using the Essential Health Benefits (EHBs) outlined in the Affordable Care Act (ACA). MSGRC decided in December 2014 to produce an adaption of the NEGC Policy Brief for the states in our region (AZ, CO, MT, NV, NM, TX, UT, and WY). This effort was primarily assumed by University of North Texas PhD candidate, Christine Cardinal, JD, MPH. Both Celia Kaye, MD, PhD and Sharon Homan, PhD, of MSGRC and Meg Comeau of The Catalyst Center also had an extensive role in bringing the brief to completion. As MSGRC continues their needs assessments for genetic resources for both patients and providers the policy brief will have an important role in guiding discussion. Please share the brief with any colleagues that may be interested. The MSGRC ACA Policy Brief can be accessed here!
NCC Provider Survey
The National Coordinating Center (NCC), administered by the American College of Medical Genetics (ACMG), is collecting information on existing genetic services and resources. Information collected will be used to inform the Health Resources and Services Administration (HRSA) on the development of models of centers that can effectively support genetic and genomic services at the regional level.
MSGRC asks all genetic providers to participate in this survey. This survey will guide us as we envision future regional genetic resources that will aid providers in better serving their patients and families. Please share the link below with partners and colleagues!
Survey link: https://www.surveymonkey.com/r/ACMGAPHLlist2015
Genetic Alliance Consumer Survey
Genetic Alliance, in their role as National Genetics Education and Consumer Network (NGECN) have created a survey to better understand the healthcare experiences of individuals with genetic disorders. The information gathered from affected individuals and families will also be an important keystone in the development of genetic service models.
The survey will explore areas in which families report barriers, including: 1) identification of the condition; 2) finding services, information, and support; 3) accessing care; 4) telemedicine; 5) adult care; and 6) care beyond the clinician's office. Genetic Alliance and MSGRC encourages partners to share the link below with everyone that may be interested in completing this survey.
Survey link: https://www.surveymonkey.com/r/ImprovingGeneticServices
As MSGRC, NCC, and the other regional collaboratives continue to develop future visions in the realm of genetic services, we hope to continue receiving feedback from all of our partners. We hope everyone's Fall is off to a lively start and also wish everyone a fun and safe Halloween with plenty of tasty treats!
Kathryn Hassell, M.D. Janet Thomas, M.D.
Project Director Associate Project Director
MSGRC staff contact information:
Kathryn Hassell, Project Director Kathryn.Hassell@ucdenver.edu Janet Thomas, Associate Project Director Janet.Thomas@ucdenver.edu Marilyn Brown, Project Manager -303-477-1976 firstname.lastname@example.org Sharon Homan, Project Evaluator Sharon.Homan@unthsc.edu Joyce Hooker, Director of Social Outreach email@example.com
THI staff contact information:
Camille Miller, Project Administrator
Sherry Wilkie-Conway, Project Oversight
Stephanie Sondrias, Events Manager
This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under Grant H46MC24095,The Mountain States Genetics Regional Collaborative for $600,000. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.