Regional Genetics Collaboratives A Hidden EHDI Resource Penny

Regional Genetics Collaboratives: A Hidden EHDI Resource Penny Hatcher, MSN, Dr. PH Nancy Vanderburg, BSN, PHN Minnesota Department of Health St. Paul, Minnesota 2/6/06

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 2/6/06

Outline National Regional Genetic Collaboratives Goal of Region 4 Collaborative (Minnesota) 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 1. 2. 3. 3 2/6/06

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 4 2/6/06

HRSA Regional Genetics & Newborn Screening Collaboratives “Region 4” New England New York/Mid-Atlantic Western Mountain Heartland Southeastern 5 2/6/06

Illinois Indiana Kentucky *Michigan Minnesota Ohio Wisconsin National Newborn Screening & Genetics Resource Center http: //www. genes-r-us. uthscsa. edu/resources/genetics 6 2/6/06

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. ” 7 2/6/06

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MN Integrated Newborn Screening (NBS) Model ¬Currently… – Blood spot – Hearing – Vital Statistics (birth, death) – Birth Defects Information System (BDIS) ¬Future – Immunizations 9 2/6/06

MN Medical Management Provider Communication System ¬Quick. Place – 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. 10 2/6/06

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 11 2/6/06

Region 4 Workgroup Mini-Grants $$ 1. 2. 3. 4. Four (4) Mini-Grants Awarded Professional Education Access to Genetic Services Community Collaboration & Family Support Long-term follow Up & Clinical Outcomes (Sept 2005 – May 2006; 9 months) 12 2/6/06

1. 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 13 2/6/06

2. 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. 14 2/6/06

3. 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 15 2/6/06

4. 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. 16 2/6/06

Hidden Resources ü Funds $$ ü Cross-collaboration • Internal • External (public, private, state, national) ü Technical Assistance/Consultation ü Sharing Expertise & Practice Models 17 2/6/06

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 18 2/6/06

Contact Information Penny Hatcher Minnesota Department of Health (MDH), EHDI Project Director penny. hatcher@health. state. mn. us 651 -281 -9937 Nancy Vanderburg MDH, Region 4 Genetic Collaborative, State Lead (MN) nancy. vanderburg@health. state. mn. us 651 -281 -9993 www. health. state. mn. us 19 2/6/06