The NBS Work Group is currently working on the following:
Inborn Errors of Metabolism Information System: The purpose of this project is to collect information, over time, on rare metabolic conditions. Please see Heartland Evaluation Report 2012-2013 for more details. The database and patient outcomes will help to develop evidence based guidlines for the care of children with these conditions. This project is led by the Region 4 Midwest Collaborative. Heartland supports participation through off-setting costs of data entry and covers travel-related costs to consortium meetings.
NBS Condition Toolkit: In an effort to assist states with the addition of recommended conditions to the uniform screening panel, Heartland NBS Work Group oversees teh development of disorder specific toolkits. These toolkits contain resources that states need to make the case for adding the condition.
Investigator Initiated Small Projects: Periodically, the Heartland issues a Request for Proposals from diverse stakeholders to address an issue related to newborn screening. Past recipients have used funding to conduct the inaugural newborn screening workshop, develop and/or disseminate educational materials, and to provide education to primary care providers. If you have a project idea, please contact us.
For more details on the work group and/or its current activities, please feel free to contact the Heartland Regional Coordinating Center.