Newborn
Screening
Resources
American
Association of Clinical Endocrinologists
http://www.aace.com/
A professional medical organization of physicians with
special education, training, and interest in the practice
of clinical endocrinology. Provides information and education
to endocrine patients so that they can have access to the
best endocrine care possible.
CenterWatch
http://www.centerwatch.com/
CenterWatch is a Boston-based publishing and information
services company and a business of The Thomson Corporation.
We provide information services used by patients, pharmaceutical,
biotechnology and medical device companies, CROs and research
centers involved in clinical research around the world.
Expanded
Newborn Screening using Tandem Mass Spectrometry
http://www.newbornscreening.info
Newborn screening programs are a collaborative effort between
public health departments, hospitals, government agencies
and the parents of the children screened. As new technologies
evolve, new challenges are faced. The goal of this project
is to examine the financial, ethical, legal and social
issues posed by the use of tandem mass spectrometry in
newborn screening.
Genes Tests
http://www.geneclinics.org/
GeneTests is a publicly funded medical genetics information
resource developed for physicians, other healthcare professionals,
and researchers, available at no cost to all interested
persons.
Genetic
Alliance
http://www.geneticalliance.org/
Genetic Alliance increases the capacity of genetic advocacy
groups to achieve their missions and leverages the voices
of millions of individuals and families living with
genetic conditions.
Genetics Education Center -
University of Kansas Medical Center
http://www.kumc.edu/gec/geneinfo.html
The
site is used by teachers, students, genetic counselors,
geneticists, other health care professionals, families,
and other educators.
The Genetic Education Materials
(GEM)
http://www.kumc.edu/gec/
The National Library of Medicine's web site for consumer
information about genetic conditions and the genes responsible
for those conditions.
The Health Resources and Services Administration
(HRSA)
http://www.hrsa.gov/
The Health Resources and Services Administration
(HRSA), an agency of the U.S. Department of Health and Human
Services, is the primary Federal agency for improving access
to health care services for people who are uninsured, isolated
or medically vulnerable.
The Human Growth Foundation
http://www.hgfound.org/
The Human Growth Foundation is a voluntary, non-profit organization
whose mission is to help children, and adults with disorders
of growth and growth hormone through research, education,
support, and advocacy.
Illinois Department of Public Health: Genetics
and Newborn Screening
http://www.idph.state.il.us/HealthWellness/genetics.htm
Provides an overview of Genetics and Newborn Screening and
Fact sheets on commonly tested for disorders
March
of Dimes
www.modimes.org/
The mission of the March of Dimes is to improve the
health of babies by preventing birth defects, premature
birth, and infant mortality. We carry out this mission
through research, community services, education and advocacy
to save babies' lives. March of Dimes researchers, volunteers,
educators, outreach workers and advocates work together
to give all babies a fighting chance against the threats
to their health: prematurity, birth defects, low birthweight.
The Maternal and Child Health Library http://www.mchlibrary.info/KnowledgePaths/kp_EPSDT.html
The Maternal and Child Health Library has
information on maternal and child health issues. It includes
guidelines for the frequency, timing, and content of health
promotion and disease prevention services for infants, children,
and adolescents.
The knowledge path is aimed at health professionals, program administrators,
policy makers, and families.
Medline Plus
http://www.nlm.nih.gov/medlineplus/print/metabolicdisorders.html
Listings of Metabolic Parent
resources including disorder specific links, latest news,
and prevention and screening
The National Birth Defects Prevention Network
http://www.nbdpn.org/current/resources/bdpm2008.html.
The National Birth Defects Prevention Network's
Education and Outreach Committee is pleased to present
the 2008 Birth Defects Prevention Month Packet, focusing
on "Preventing
Infections during Pregnancy.
National Coordinating Center of the Regional Genetics
Collaboratives: http://www.nccrcg.org/
In 2004, the Maternal and Child Health Bureau of the Health
Resources and Services Administration (MCHB/HRSA), Genetic
Services Branch (GSB) awarded grants to establish seven
Genetics and Newborn Screening Regional Collaborative Groups
(RCs) and a National Coordinating Center (NCC) as part
of on-going efforts to improve the health of children and
their families by promoting the translation of genetic
medicine into public health and health care services. The
NCC is formed as a partnership with the GSB/MCHB/HRSA through
a cooperative agreement with the American College of Medical
Genetics (ACMG). The NCC is organized around a central
office and an Advisory Committee. The Advisory Committee
includes the seven RCs and representatives of national
organizations that serve as resources to the NCC and the
RCs.
National Institute of Health
http://www.nih.gov/
NIH is the nation's medical research agency – making
important medical discoveries that improve health and save
lives.
National Newborn Screening and Genetic Resources
Center
http://genes-r-us.uthscsa.edu/resources/newborn/overview.htm
Provides
an Introduction and History of newborn screening. A
list of routine disorders and explanations are included.
The National Office of Public Health Genomics (NOPHG)
http://www.cdc.gov/genomics/
This
site provides updated information on how human
genomic discoveries can be used to improve health & prevent
disease
National
Organization for Rare Disorders
http://www.rarediseases.org/
Acts as a clearinghouse for information about orphan
diseases and as a network for families with similar
disorders; encourages and promotes increased scientific
research on the cause, control, and ultimate cure of
rare disorders, including inherited metabolic diseases;
accumulates and disseminates information about orphan
drugs and devices; and educates the general public and
medical profession about the existence, diagnosis, and
treatment of rare disorders.
National Society of Genetic Counselors
http://www.nsgc.org/
Nebraska Newborn Screening Program Home
page
http://www.hhs.state.ne.us/nsp/
The Newborn Screening program of Health and Human Services Regulation and Licensure
administers the program with the advice of a Newborn Screening Advisory Committee.
The program regulates disorders to be screened, contracts for laboratory services
and provides follow-up to ensure that babies receive any repeat or confirmatory
testing.
Society for Inherited Metabolic Disorders
http://www.simd.org/
The SIMD is a non-profit professional organization
whose purpose is to promote the worldwide advancement of
research and medical treatment of inherited disorders
of metabolism
Region 4 Genetics Collaborative
http://medhomes.region4genetics.org/primer.asp
- intro
The Region 4 Genetics Collaborative provides a forum for seven
states to share available newborn screening and genetic resources,
an advancement that will result in improved geographic distribution
of genetics expertise throughout the region. The seven state
members include Illinois, Indiana, Kentucky, Michigan, Minnesota,
Ohio and Wisconsin. The provision of optimal genetic services
to children with heritable disorders and their families relies
on a partnership between public health programs, screening/diagnostic
laboratories, and clinical providers.
The Screening, Technology And
Research in Genetics (STAR-G) Project
http://www.newbornscreening.info/
Newborn screening programs are a collaborative effort between
public health departments, hospitals, government agencies
and the parents of the children screened. As new technologies
evolve, new challenges are faced. The goal of this project
is to examine the financial, ethical, legal and social issues
posed by the use of tandem mass spectrometry in newborn screening.
US Department of Health and Human Services
http://www.os.dhhs.gov/
HHS
is the U.S. government's principal agency for protecting
the health of all Americans and providing essential human
services, especially for those who are least able to help
themselves.
*This page includes resources that have compiled to date.
If you would like to suggest additional resources to be
added please sent them to screening@aap.org for
review.
* External Resources are not a part of the AAP.ORG
Web site. AAP is not responsible for the content of sites
that are external to the AAP. Linking to a Web site does
not constitute an endorsement by AAP of the sponsors
of the site or the information presented on the site.
Last Updated
February 5, 2008
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