Regional Genetics Collaboratives: A Hidden EHDI Resource Penny Hatcher, MSN, DrPH Nancy Vanderburg, BSN, PHN Minnesota Department of Health St. Paul, Minnesota

2/6/062 Faculty Disclosure Information In the past 12 months, I/we have not had a significant financial interest or other relationship with the manufacturer(s) of the product(s) or provider(s) of the service(s) that will be discussed in my presentation. This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA or if you will be discussing unapproved or "off-label" uses of pharmaceuticals or devices.

2/6/063 Outline 1.National Regional Genetic Collaboratives 2.Goal of Region 4 Collaborative (Minnesota) 3.Minnesota’s Integrated Newborn Screening Model 4.Region 4 Mini-grants That Impact EHDI 5.Why Collaboratives are a Hidden EHDI Resource 6.What EHDI Programs Can Do to ‘Tap’ Collaboratives

2/6/064 HRSA Regional Genetics & Newborn Screening Collaboratives  Seven (7) Collaboratives in the U.S.  Supported by the DHHS/Health Resources and Services Administration, Maternal and Child Health Bureau, Genetic Services Branch.  June 2004 – May 2007

2/6/065 HRSA Regional Genetics & Newborn Screening Collaboratives Mountain Western Heartland Southeastern New York/Mid-Atlantic New England “Region 4”

2/6/066 National Newborn Screening & Genetics Resource Center Illinois*MichiganWisconsin IndianaMinnesota KentuckyOhio

2/6/067 Goal of Region 4 Collaboratives  Provides a forum for the 7 states to share the use of available newborn screening and genetic resources  Improved geographic distribution of genetics expertise throughout the region  Decrease each state’s need to “reinvent the wheel.”

2/6/068

9 MN Integrated Newborn Screening (NBS) Model  Currently… –Blood spot –Hearing –Vital Statistics (birth, death) –Birth Defects Information System (BDIS)  Future –Immunizations

2/6/0610 MN Medical Management Provider Communication System  QuickPlace –HIPAA compliant, web-based communication platform between blood spot partners –Secure electronic communication between the MN Department of Health, Mayo Clinic, and the University of MN Medical Center  Enhances screening and diagnostic evaluation of infants.

2/6/0611 MN Region 4 Genetics Projects  Developing practice models for tracking –Hearing, blood spot, birth defects  Short- & long-term follow-up  Evaluation of short-term follow-up –E.g., Follow-up form (handout)  Enhance genetic services

2/6/0612 Region 4 Workgroup Mini-Grants $$ Four (4) Mini-Grants Awarded 1. Professional Education 2. Access to Genetic Services 3. Community Collaboration & Family Support 4. Long-term follow Up & Clinical Outcomes (Sept 2005 – May 2006; 9 months)

2/6/ Professional Education Mini-Grant  $15,000  Develop web-based pre-natal provider newborn screening (blood spot, hearing) educational materials  Assess current parent materials, i.e. literacy level, parent input, accuracy –Louisiana State University materials

2/6/ Access to Genetic Services Mini- Grant  $15,000  Assess barriers to accessing genetic services (blood spot, hearing, birth defects, etc.) –Review past state surveys & needs assessments  Identify feasibility of new service delivery & reimbursement practices –or other best practices to improve deliver of genetic services.

2/6/ Community Collaboration & Family Support Mini-Grant  $5,000  Identify parent information and support models in each of the seven states e.g., WI “Guide-by-your side,” MN Parent Mentor, etc  Recommend best practices addressing information and support regarding: –Child’s specific disorder –State-wide and interstate support systems –How parents can access information/resources in their own community

2/6/ Long-Term F/U & Clinical Outcomes Mini-Grant  $6,034  Convene an expert group of metabolic clinicians from each state to facilitate the development of the registry through a one day face-to-face meeting.  Development of a research disease registry for one condition identified through newborn screening [MCADD] –Further the development of clinical best practice models.

2/6/0617 Hidden Resources Funds $$ Cross-collaboration Internal External (public, private, state, national) Technical Assistance/Consultation Sharing Expertise & Practice Models

2/6/0618 What Can You (EHDI) Do? 1.Go to NNBSGRC website 2.Identify Regional Genetics Coordinator(s) a.Meet with Coordinator and/or workgroups 3.Review Your Region’s Grant Abstract 4.Become a Partner

2/6/0619 Contact Information Penny Hatcher Minnesota Department of Health (MDH), EHDI Project Director Nancy Vanderburg MDH, Region 4 Genetic Collaborative, State Lead (MN)