2006 Collaborative Meeting

2006 Heartland Regional Genetics and Newborn Screening Collaborative Annual Conference

Sept 27-29, 2006 Omaha Hilton, Omaha Nebraska

Thank you to all attendees for making the conference a success! Over 70 people from 12 states attended.

Quick Links

• Evaluations
• Information from the Conference
• Speaker Slide Sets
• Posters
• 1st Year Pilot Projects
• 2nd Year Pilot Projects
• Links to Omaha Institutions

Evaluations

Results from the conference evaluations were mostly positive. Click on the links below for more information.
Summary of conference evaluations
Comments from evaluations

Information from the Conference

• Agenda
• Reference List - This was not included in the conference book due to length, but is available here.

Speaker Slide Sets

What are Integrated Data Systems, and Why You Should Participate: Nancy Hoffman, RN, MSN Chief, Bureau of Health Informatics, Missouri Department of Health and Senior Services
Comparative Genomic Hybridization: Warren G. Sanger, Ph.D.,Director, Human Genetics Laboratory, Munroe-Meyer Institute

Newborn Screening Update: Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children: Amy Brower, PhD Executive Director, Medical Informatics & Genetics Third Wave Technologies, Inc.

Newborn Screening Long Term Follow-Up: Sara Copeland, MD, Medical Director of Newborn Screening for Iowa, Children's Hospital of Iowa

Medical Transition for Youth with Special Health Care Needs: Bradley Schaefer, MD, Associate Director -Meyer Genetic and Rehabilitation Institute, University of Nebraska Medical Center

Medical Home Model: Amy Gibson, RN, MS, Assistant Director Boys Town Institute for Child Health Improvement

Vision for the regional collaboratives: Michelle Puryear, MD, PhD Health Resources and Services Administration (HRSA)-Genetic Services Branch

National Coordinating Center Update: Judith Benkendorf, MS, CGC, Project Manager, National Coordinating Center

Perspectives on Lay Advocacy: Mark A. Smith, M.S., Consumer/Family Coordinator, Nebraska Center on Disabilities, Munroe Meyer Institute for Genetics and Rehabilitation. No slides.

Bridging the gap between national and regional family health history initiatives: James C. O'Leary, Program Manager, Genetic Alliance, Inc.

Posters

• State Posters:
  Arkansas
  Iowa
  Kansas
  Missouri
  Nebraska
  Oklahoma
  North Dakota
  South Dakota

1st Year Pilot projects

fMRI Studies of Food Motivation in Prader-Willi Syndrome
PI: Savage C and Butler M

Can Telehealth Replace Genetics Outreach Clinics In Rural Missouri?
PI: Miles JH and Butler B (Presented by Donna Nale)
Online Genetic & Metabolic Education Modules
(No poster-see on-line modules)
PI: Copeland S, Grange K, and Piper K

Family History Day 2005 in Greater Kansas City
PI: Collins D

Development and Implementation of State Genetics Plans: Technical Assistance
PI: Butterfield L and Riske M

Adherence to National Clinical Guidelines for Down Syndrome
PI: Ferguson M, Mulvihill J, and Schaefer B

2nd Year Pilot projects

Assessing Parenting Capacities and Stress in Neurofibromatosis 1
PI: Larry Mullins, Ph.D.

Online CME: A Practical Course in Expanded Newborn Screening
PI: Susan E. Palmer

Reduce Disparity of NBS Lab Services in the Heartland Region
PI: Stanton Berberich, Ph.D.

Links to Omaha Institutions

Boys Town National Research Hospital
Munroe-Meyer Institute for Genetics and Rehabilitation, University of NE Medical Center Link to: Informative write-up on Monroe Meyer Institute
University of Nebraska main page
Creighton University