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.
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.
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.
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.
HEARTLAND PILOT PROJECTS PROGRAM
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.
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
- I-Library for Health Consumers & Genealogists
- Does PKU Camp Education Improve Plasma Phenylalanine Levels?
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
- All 2007-2008 Pilot Projects
- Expanded Newborn Screening: If we offer it, will they come?
- Genetic Testing for Maple Syrup Urine Disease in Mennonite Communities
- Heartland Multi-State Teratogen Education Project
2006-2007 Pilot Projects
Funded by the Heartland Collaborative:
- Assessing Parenting Capacities and Stress in Neurofibromatosis 1
- Online CME: A Practical Course in Expanded Newborn Screening (Cancelled)
- Reduce Disparity of NBS Lab Services in the Heartland Region
- Two-tiered Newborn Screening for SCID utilizing TREC & IL-7 (Cancelled)
Funded by residual Great Plains funds:
2005-2006 Pilot Projects