Professionals

Resources for Professionals

For Primary Care Physicians (PCPs) and general practitioners
For Maternal and Child Health (MCH) Training Program Grantees
For Educators
  • Educators' Guides for PKUGalactosemiaMCADD, and Urea Cycle Disorders, were developed by the New England Consortium of Metabolic Programs in collaboration with the NEGC.
  • Genetic Education Materials for School Success (GEMSS) is a new and unique website created for teachers, therapists, counselors, parents and schools so they can best support students with genetic conditions. The site houses a library of useful tools and tips for educational and classroom support, dietary needs, field trips, sports and much more, all in one place. The aim of GEMSS is to make school a successful and positive experience for all students who have genetic conditions.
  • A Guide for Prenatal Educators- This appealing booklet was designed to make it easier for prenatal educators to effectively inform expectant parents about newborn screening. It includes "what expectant parents need to know","credible resources for parents", and "activties to incorporate". It also lists the 29 disorders recommended for newborn screening by The American College of Medical Genetics (ACMG). Children's Hospital, Boston, oversaw the development of this project, with help from HRSA.
  • Incorporating Genetics and Genomics Into Your Curriculum, What Today's Nurse Educators Need to Know- free on-line educational opportunity for nurse educators (4 CEU's will be awarded by the National League for Nursing); training modules are delivered by Dr. Susan Capasso of St. Vincent's College, in cooperation with the CT Department of Public Health. Funding was provided by HRSA through the NEGC Innovative Project program. Free Online  Workshop available at www.ct.train.org.
Education Programs for Pediatric & Neurology Providers

The following two resources are provided by The National Coalition for Health Professional Education in Genetics in collaboration with Jackson Laboratory.

Genomic Tools: Chromosomal Microarray. This is a resource for developmental and behavioral pediatricians on indications for and interpretation of chromosomal microarray (CMA). 

Genomics for Child Neurology is a program for child neurology educators and clinicians that addresses risk assessment, genetic and genomic testing. and communication with families about genomic data.

 

General genetic and genomic information
Newborn Screening
Medical Foods "Tip Sheet" from Maine

Tips for Getting Formula for Individuals with Inborn Errors of Metabolism, includes tips for: 

  • Families
  • Metabolic Clinics
  • Pharmacies

The tip sheet was developed by the Foods and Formula Workgroup* in Maine, who first surveyed families to learn about difficulties in filling prescriptions for metabolic formula. They also talked to pharmacists and metabolic clinics to learn from their perspectives. All then met face to face to problem-solve, the result being the tip sheet Thanks to the Workgroup for sharing these supplemental documents:

*Membership includes representatives from Maine Medical Partners, Eastern Maine Medical Center, Maine CDC Children with Special Health Needs, and Maine CDC WIC Nutrition Program.

Genetic Information Nondiscrimination Act (GINA)
Family Health History
  • My Family Health Portrait - an online tool from the Surgeon General to help you create a personalized family health history report. 
General resources
National Centers

National Center for Medical Home Implementation. This resource is for health professionals, families, and anyone interested in creating a medical home for all children and youth.

National Coordinating and Evaluation Center: Sickle Cell Disease and Newborn Screening The Sickle Cell Disease and Newborn Screening Program (SCD-NBS) is comprised of 17 national funded community based sickle cell disease (SCD) projects.  The community-based SCD projects partner with State newborn screening programs, comprehensive sickle cell treatment centers, and health care professionals to provide support to infants screened positive for SCD and trait and their families. The projects work cooperatively and with the SCDAA-NCEC to implement a model program of SCD carrier follow-up to include notification, extended family testing, counseling and education of affected individuals and families.

National Health Care Transition Center Assisting youth and families with health care transition.

Data Resource Center for Child and Adolescent Health The purpose of The Data Resource Center for Child and Adolescent Health (DRC) is to advance the effective use of public data on the health and health-related services for children, youth and families in the United States. The DRC does this by providing hands-on access to national, state, and regional data findings as well as offering technical assistance in the collection and use of this data by policymakers, program leaders, advocates and researchers in order to inform and advance key child and youth health goals.

National Center for Family/Professional Partnerships Providing leadership in helping families of children and youth with special health care needs / disabilities and professionals partner to improve care.