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Resources
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Resources for Professionals
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Newborn Screening
- Newborn Screening Clearinghouse- website being developed by the Genetic Alliance with the help of the Regional Collaboratives, which aims to be a "one stop shop" for information related to newborn screening
- Newborn Screening Coding and Terminology Guide: Data Standards for Electronic Reporting - released by the U.S. National Library of Medicine in partnership with NIH, HRSA & DHHS. The goal of this guide is to promote and facilitate the use of electronic health data standards in recording and transmitting newborn screening test results.
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Newborn Screening Brochures For information about newborn screening in the New England states, including including state-specific brochures, lists of current conditions for which there is testing (there are differences from state to state), and contact information, please click on a state below:
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For Educators
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Genetic Education Materials for School Success (GEMSS) This new and unique website was 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. The website includes information on supporting students with: - 22q Deletion
- Down Syndrome
- Fragile X
- MCAD
- PKU
- Sickle Cell Disease
- VLCAD
- Williams Syndrome
- Undiagnosed/Other
- An Educator's Guide to MCADD was developed under the supervision of Susan Waisbren, PhD, at Children’s Hospital Boston, with help from elementary school teachers, parents of children with MCADD, and the FOD Family Support Group. This project was supported by the NEGC and HRSA, and was the result of an Innovative Project award.
- Galactosemia: Educators' Resources. These guides, developed at Children's Hospital Boston with Innovative Project funding from the NEGC, are for teachers working with students who have galactosemia. Read more on the New England Consortium of Metabolic Programs website.
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- Understanding Galactosemia
- an introductory guide for educators, featuring a basic description of galactosemia, suggested teaching strategies, classroom managment ideas, and additional resources
- Galactosemia - Resources for Educators
- feature information about teaching strategies, therapies, classroom environments, teaching technologies, and other resources.
- 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.
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Genetic Information Nondiscrimination Act (GINA)
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General genetic and genomic information
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Family Health History
- Family Health History Awareness- slide presentation developed by the NEGC Dissemination, Education and Marketing (DEM) Work Group. This includes a comprehensive slide library and training/public awareness modules to meet the needs of varied target audiences (e.g. general public, nurses, social workers, public health professionals, students). The new modules were field-tested and were made available in April 2009.
- My Family Health Portrait - an online tool from the Surgeon General to help you create a personalized family health history report. It is available in multiple langeuages through the Brigham & Women's Hospital website.
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General resources
- Effective Healthcare Programs at the Agency for Healthcare Research and Quality (AHRQ) offers plain-language guides for clinicians and families; they recently released guides regarding use of human growth hormone for children with CF.
- Transition Toolkit - developed by Children's Hospital with NEGC support; includes 1 page descriptions of 5 metabolic conditions:
- Children with Down Syndrome: Families are more likely to receive resouces at time of diagnosis than in early childhood; report from the Government Accountability Office (Oct 2010)
- Novel Influenza A (H1N1) Virus and Children with Underlying Medical Conditions; AAP Work Group Clarifies Children at Highest Risk (Oct 09)
- Understanding the Genetics of Deafness, A Guide for Patients and Families - Harvard Medical School, Center for Hereditary Deafness; for the Spanish translation of this guide, click on Comprendiendo la Gene'tica de la Sordera, Una Gui'a para los Pacientes y sus Familias.
- American College of Medical Genetics - ACT Sheets
- Making Care Coordination a Critical Component of the Pediatric Health System: A Multidisciplinary Framework; by Richard C. Antonelli, M.D., M.S., Jeanne W. McAllister, B.S.N., M.S., M.H.A., and Jill Popp, M.A; Overview: "It is widely acknowledged that the lack of care coordination within the U.S. health care system perpetuates the fragmentation of care, cost inefficiency, and poor health outcomes. This report proposes a framework for care coordination in a high-performing pediatric health care system..."
- Transition: Psychosocial Considerations- power point presentation (PDF) by Dr. Susan Waisbren, Children's Hospital Boston; Transition Work Group Chair; this easy-to-grasp and upbeat overview of issues related to transitioning to adult care would be valuable for teens and parents alike.
- Affordable Care Act The Affordable Care Act and Children with Special Health Care Needs: An Analysis and Steps for State Policymakers
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Information sharing across states in New England
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For Psychologists
The new website of the Genetic and Metabolism Psychology Network whose goals are: to establish a forum for psychologists who evaluate and counsel individuals with metabolic and other genetic disorders, to validate core neuropsychological tests for patients, to collaborate on research, and to produce and distribute information to families and educators. resource for psychologists who treat patients with rare genetic or metabolic disorders
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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.
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