This report is an updated version of the report Too Young to Die from 2012 which analyzed sudden cardiac death (SCD) occurrence, specifically among youth from 1-39 years of age. It includes updated death certificate data from 2007-2016, background information on SCD, mortality statistics, case reviews and potential prevention practices.
Resources
Inborn Errors of Metabolism Treatment
Diet for Life treatment for individuals with inborn errors of metabolism requires access to multiple types of medical foods, formulas, medications and supplements along with careful diet monitoring and modifications by specialists throughout the lifespan. Michigan and national resources are provided here to help understand and access insurance coverage for these products.
NHLBI Sickle Cell Disease Management Guidelines
Guidelines provided by the National Heart, Lung, and Blood Institute (NHLBI) for managing sickle cell disease. This report is intended to assist healthcare professionals in their management of the disease among their infant, adolescent, and adult sickle disease patients.
Michigan Newborn Screening for CCHD (Arabic)
Brochure in Arabic for parents highlighting Michigan’s Newborn Screening program for Critical Congenital Heart Disease.
Michigan Newborn Screening for CCHD (Spanish)
Brochure in Spanish for parents highlighting Michigan’s Newborn Screening program for Critical Congenital Heart Disease.
Michigan Newborn Screening for CCHD (English)
Brochure for parents highlighting Michigan’s Newborn Screening program for Critical Congenital Heart Disease.
Residual Newborn Screening Blood Spot Directive
An MDHHS form that allows parents or those over age 18 to opt out of blood spot research through the Michigan BioTrust for Health or to request that the Newborn Screening Program destroy the residual blood spots in storage at both MDHHS and the Michigan Neonatal Biobank.
Link to resource:
https://michigan.gov/documents/mdhhs/MDHHS-5683_610453_7.dot
https://michigan.gov/documents/mdhhs/MDHHS-5683_610453_7.dot
BioTrust Community Engagement Reports
The Michigan BioTrust for Health travels around the state to provide education regarding the BioTrust to all Michiganders. Annual community engagement reports detailing these efforts are maintained on the BioTrust webpage.
BioTrust Research Report
A list of all MDHHS approved research projects that have used blood spots through the Michigan BioTrust for Health. The research report is updated quarterly and is available at www.michigan.gov/biotrust.
NBS & BioTrust Roadmap
The newborn screening and BioTrust roadmap highlights the journey of newborn screening for new families in Michigan and provides information on what routes parents can choose for blood spots after newborn screening is complete.