Resources For Providers



Disease Specific

A Resource Guide for Early Hearing Detection & Intervention
ACMG ACT Sheets  NCC
An Educator's Guide to MCADD NEGC
An Educator's Guide to PKU NEGC
An Educator's Guide to Urea Cycle Disorders NEGC
EHDI State-to-State UNHS Follow-up Region 4
Emergency Cards NYMAC
Hearing Loss Brochures NCC
Increasing Genetic Referrals for Children Identified through the Early Hearing Detection and Intervention (EHDI) System Region 4  
Infants Suspected to have Very-Long Chain acyl-CoA dehydrogenase Deficiency from Newborn Screening  WSGSC
Maternal Serum Multiple Marker Screening for Chromosome Abnormalities and Open Neural Tube Defects: A Fact Sheet for Practitioners WSGSC
Metabolic Consortium: Disease-Specific Care Plans and Shared Data-Sets and Parent Handouts MSGRC
Nutrition Guidelines Portal SERC
Tips for Getting Formula for Individuals with Inborn Errors of Metabolism   NEGC
The Other Energy Crisis: Arctic Variant CPT1A WSGSC
Understanding Galactosemia  NEGC
Understanding Galactosemia: Resources for Educators  NEGC


Education

A Guide for Prenatal Educators NEGC
Childbirth Education Toolkit NYMAC
Experience the Future: Discover the Power of Genetics NCC 
Family Centered Pediatric Emergency Department Sickle Cell Assessment of Needs and Strengths (FC-Peds-ED-SCANS) © Region 4
Genetics Education Materials for School Nurses   NEGC
Genetics in Primary Care Institute
Getting Started on a Portable Health Record or Personal Health Record (PHR) for Children or Adults with Genetic Conditions WSGSC  
Online Genetic Modules Heartland 
Pediatric Genetics from CDC
Stakeholder Perspectives on Decision- Analytic Modeling Frameworks to Assess Genetic Services Policy  WSGSC  

 

Emergency Preparedness

Newborn Screening: A National Snapshot with Implications for Emergency Preparedness  SERC

 

Family Health History

Family Health History Tool Kit  Heartland 


Medical Food

Medical Food Coverage Survey  SERC

Medical Home

Medical Home Portal  MSGRC
National Center for Medical Home Implementation 
Partnering with Your Doctor: The Medical Home Approach (Available in EnglishArabic, and SpanishRegion 4 
Pediatric Care Coordination: Beyond Policy Practice, and Implementation Webinar Series  National Center for Medical Home Implementation
Role of the Geneticist in the Medical Home Heartland
The Medical Home: Building a New Brand from Primary Care NEGC

Newborn Screening

A Guide for Prenatal Educators: Newborn Screening NEGC
A Parent's Guide to Newborn Screening Video (Available in English and Spanish) SERC  
Birthing Facility-Based NBS Coordinator Responsibilities Region 4
National Assessment of the Newborn Screening Workforce for Metabolic Conditions: Phase One and Phase Two Reports NEGC
Newborn Screening Coding and Terminology Guide 
Newborn Screening Standardization Guidelines NYMAC
Newborn Screening: What Prenatal Care Providers Need to Know (Training Course and Reference Guide) Region 4 
NBS Connect  SERC


Region Specific


NEGC
Genetic Alliance Understanding Genetics:A NEGC Guide for Patients and Health Professionals 
Genetics Resources Directory 
Transition Efforts in New England

NYMAC
Genetic Alliance Understanding Genetics:A NYMAC Guide for Patients and Health Professionals (Available in English and Spanish)
Needs Assessment Plan
NYMAC State Newborn Screening Program Notification Protocols

SERC
Centers Directory 
Diagnostic Lab Test Data 
Sample Exchange
SERC State Genetics Plans

Region 4
CCHD Materials 

Heartland
Clinical Genetic Service Search Engine 
Education for Professionals

MSGRC
MSGRC Publications List 

WSGSC
Emergency Management Assistance Compact (EMAC)
Guam Genetics and Newborn Screening Assessment Report
Health Care Perspectives of Guam Families with Genetic Diagnoses 
 

Telegenetics

Telemedicine Manual for Clinical Genetic Services Heartland 

Transition

Healthcare Transition for Medical Professionals Region 4
National Health Care Transition Center 
Physicians Training Curriculum & Resources: Health Care Transition For Youth with Special Health Care Heartland