2008 Collaborative Meeting

Heartland Regional Genetics and Newborn Screening Collaborative
Annual Conference

September 11-12, 2008

The 5th annual Heartland Regional Genetics and Newborn Screening Collaborative conference was held September 11-12, 2008 in beautiful Sioux Falls, South Dakota at the Holiday Inn City Centre, in the heart of downtown. We had over 80 attendees from 16 states. Thank-you to everyone who attended!

Conference Information

Agenda: This year's agenda included updates on current projects and other topics relevant to the region. Break out sessions for Work Groups were included.

Evaluation Summary: 40 evaluation forms were returned and the results compiled. Feed back was generally positive.

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General Schedule

Wed. September 10: Advisory Board Meeting 4-7pm
Thurs. September 11: Meeting from 8 am - 5 pm.

Evening Event: 6:30- Reception; 7:30 Dinner at Washington Pavilion.

Fri. September 12: Meeting from 8 am - 3 pm

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Speaker Slides

Thursday, September 11:

Sanford Health Overview-- Richard Adcock and Amy Elliott

Newborn Screening Update--Amy Brower

Newborn Screening for Pompe Disease--Kim Noble-Piper

Newborn Screening Back-up Testing Project--Stanton Berberich

Newborn Screening Back-up Testing Project--Patrick Hopkins

Handout from Berberich and Hopkins

Progress Report on NBS Back-up Project

Healthy and Ready to Work: Transition--Patti Hackett

Handouts from Patti Hackett

HRTW--Changing Role for Youth

HRTW--Questionaire Summary Findings

HRTW--Doctor Visit Tips

HRTW--Portable Medical Summary SMAPLE

HRTW--Checklist for Transition

Financial Resource Guide--Sookyung Shin

South Dakota Medical Genetics Resources--Laura Davis-Keppen

Integrated Data Systems: South Dakota--Kayla Tinker

Integrated Data Systems: Missouri--Nancy Hoffman

Friday, September 12:

Regional Coordinating Center Annual Report--Lori Williamson

Regional Coordinating Center Annual Report--John J. Mulvihill

Genetic Services Branch Report--Jill Shuger

National Coordinating Center Update--Judith Benkendorf

Handout from Judith Benkendorf

NCC Fact Sheet 2008

MedHome Portal Project--Chuck Norlin

Genetic System Assessment--Ann Chou and John J. Mulvihill

Poster Session

Teratogen Education--Beth Conover

Newborn Screening Town Hall Meetings--Gene Hallford

NF1 Parental Stress--Gene Hallford

MSUD Carrier and Diagnostic Testing--Charlotte Phillips

Newborn Screening Education--Sharmini Rogers

North Dakota State Genetics Plan--Jayne Brown

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Travel Reimbursement

The Heartland Regional Coordinating Center will pay travel costs for Advisory Board members and key active participants. See Travel Funding List below. For those whose travel will be covered, Heartland will pay for travel to the conference, lodging and meals. Please see the Travel Reimbursement Information document below for complete instructions, including necessary forms.

Travel Funding List
Travel Reimbursement Information

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