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HIPAA and FERPA Working Together While Keeping the Privacy of the Student in Mind

View FERPA Slideshow
View Educaiton & HIPAA Slideshow

Comparing School-Based Plans for CYSHCN and/or Genetic Conditions

View Slideshow

Individualized Healthcare Plan Project

Heather Smith and Melanie Baxter present an overview of Individualized Healthcare Plans (IHP), share a project from the state of Kansas and plans for expansion within the eight states of the Heartland Collaborative. If you are interested in participating in Heartland’s IHP project, please contact the HRCC.


Individualized Healthcare Plans: What is Your State Doing?

CCHD Screening: An Overview for Moving Forward

Dr Gerard Martin and Elizabeth Bradshaw from Children’s National Medical Center presented information about CCHD Screening to Heartland Collaborative members. The webinar was recorded and is avialable for viewing. The slide set is also available for download.

CCHD Screening: An Overview for Moving Forward

Heartland Telemedicine Manual for Clinical Genetic Services

Heartland Telemedicine Manual for Clinical Genetic Services

Genetic Systems Assessment Project

The goal of this project is to develop, pilot, and assess the feasibility of a Genetics Systems Assessment instrument (GSA) in the Heartland Region, in consultation with national and international colleagues, by:

  • Identifying a set of measurements to be included in the assessment tool;
  • Testing the feasibility of reporting on the list of measurements; and
  • Assessing the feasibility of adoption and implementation of a genetics systems assessment tool.

Short Project Narrative
Expert Panel Meeting Summary (Chicago–May 2008)
Steering Committee Meeting Summary (Phoenix–March 2008)

Expert Panel Meeting Summary (Dallas–May 2009)

Steering Committee and Expert Panel Meeting (Albuquerque–March 2010)

Steering Committee and Expert Panel Meeting (Kansas City, MO–April 2011)

Emergency Preparedness: Heartland Newborn Screening Back-up Testing Project

The Heartland Newborn Screening Backup Testing Project is a collaboration between the Iowa and Missouri Newborn Screening (NBS) Laboratories. The goal is to have both states prepared to backup the other state in the event of a calamity, and be prepared to take on the testing of their NBS sample load. The long-term goal of this project is for IA and MO to provide backup for the entire Heartland Region. To date, the Iowa and Missouri NBS Laboratories held two successful one-day emergency drills in February and March, 2008, utilizing the Emergency Management Assistance Compact. In addition, the second annual Heartland Newborn Screening Workshop was held in April, 2008. The 2-day workshop focused on emergency preparedness, and highlighted the results of the Heartland Newborn Screening Backup Testing Project. Future goals of this project were discussed and plans to conduct a 3-day drill this fall are already in place. The workshop was an excellent opportunity for Heartland state NBS programs to collaborate, share best practices and exchange ideas for advancing and improving NBS across the Heartland region. Progress report on NBS Back-up Testing Project.

Pilot Projects


The Heartland Pilot Projects Program is a mechanism for innovative solutions to address goals and national priorities while simultaneously stimulating synergy and cooperation between states and regions. Results of these projects will inform practices, programs, funding, and policy at the state, regional and federal levels. Proposals must address one of the Heartland goals or the priorities listed in the HRSA guidance (2006). The Heartland Regional Coordinating Center intends to fund at least two pilot projects in each cycle. Funding decisions are based on quality of the project and proposed budget.

Heartland Pilot Project Projects Program Summary

2011-2012 Pilot Projects

  • A Novel Approach in Telegenetic Services: Pediatrician and Genetic Counselor Team
  • Real Time Family Support Through Social Media

2010-2011 Pilot Projects

2008-2009 Pilot Projects

  • Using an Electronic Child Profile to Enhance Performance
  • Newborn Screening, What Providers and Parents Need to Know

2007-2008 Pilot Projects

2006-2007 Pilot Projects

Funded by the Heartland Collaborative:

Funded by residual Great Plains funds:

2005-2006 Pilot Projects