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MCADD - Services & Other Resources
Information & Support
For Parents and Patients
Fatty Oxidation Disorders (FOD) Family Support Group
The FODsupport.org site offers a variety of information for families about fatty acid oxidation disorders, support groups,
coping, finances, and links to other sites.
Fatty Oxidation Disorders Famiy Support Group
Information for families about fatty acid oxidation disorders, including an online support group, insurance information,
conferences, etc. There are links to other sites as well.
MCAD: A Guide for Parents
(
618 KB)
From the Western States Genetic Services Collaborative, this 8-page guide provides information about Medium Chain Acyl-CoA
Dehydrogenase Deficiency including an overview; social concerns; sample treatment plan; glossary; regional resources; references
and more.
MCADD (Genetics Home Reference)
Excellent, detailed review aimed at patients and families from the National Library of Medicine's Genetics Home Reference
site.
MCADD info for parents (STAR-G)
From the Screening, Technology and Research in Genetics (STAR-G) site, providing information for parents about MCADD and links
to other sites including parent support groups.
MCADD information for parents
From the Screening, Technology and Research in Genetics site, providing information regarding MCADD and links to other sites
(parent support groups, etc).
For Professionals
ACT Sheet for MCADD (ACMG)
( 348 KB)
Developed by the American College of Medical Genetics (ACMG), includes recommended responses to positive newborn screening
test results, diagnostic evaluation, clinical expectations, and sources of additional information. See the ACMG ACT Sheets
and Confirmatory Algorithms (link elsewhere on this page) for more info and sheets on other conditions.
ACT Sheets and Confirmatory Algorithms (ACMG)
The American College of Medical Genetics (ACMG) has developed ACTion (ACT) Sheets and algorithms for responding to positive
newborn screening test results. This page contains a table with links to all of the ACT Sheets and related algorithms.
Heartland Regional Genetics and Newborn Screening Collaborative
Region 5 of the Genetic Service and Newborn Screening Regional Collabortative Groups; provides information for families and
providers including listings of local resources.
Intermountain Healthcare Clinical Genetics Institute
provides clinical medical genetics services and genetic couseling at two outreach clinics in Salt Lake City and Logan.
MCAD Deficiency (Gene Reviews)
Detailed genetic information about MCADD sponsored by the NIH.
MCADD (GeneReviews)
Excellent review by Detrich Matern, MD and Piero Rinaldo, MD, PhD including clinical description, differential, management,
genetic counseling, molecular genetics, and a bibliography.
MCADD (OMIM)
From the Online Mendelian Inheritance in Man site, hosted by Johns Hopkins University, providing technical information for
providers on genetic disorders, links to MEDLINE, and links to other scientific information and sites.
MCADD Acute Illness Protocol (NECMP)
( 17 KB)
A guideline for healthcare professionals treating the sick infant/child who has previously been diagnosed with MCADD; developed
under the direction of Dr. Harvey Levy, Senior Associate in Medicine/Genetics at Children’s Hospital Boston, and Professor
of Pediatrics at Harvard Medical School, for the New England Consortium of Metabolic Programs.
MCADD info for professionals (STAR-G)
On the Screening, Technology and Research in Genetics (STAR-G) site, one of a series of Disorder Fact Sheets for Professionals;
structured list of information about the condition, with links to more information.
Utah Chapter, AAFP
American Academy of Family Physicians chapter site provides information about meetings, conferences, news, and other chapter
activities.
Utah Chapter, AAP
American Academy of Pediatrics chapter site provides information about meetings, conferences, and other chapter activities.
Services
Disability/Diagnosis-Specific Advocacy
See all Disability/Diagnosis-Specific Advocacy services providers (57) in our database.
Genetics, Prenatal
Perinatal Genetics,
more info...
100 Mario Capecchi Drive
Salt Lake City, UT 84132
Phone: 801-585-1861
http://intermountainhealthcare.org/hospitals/primarychildrens/services/pages/Service.aspx?index=Genetics
See all Genetics, Prenatal services providers (4) in our database.
Newborn Screening Programs
Utah Newborn Screening Program,
more info...
44 Mario Capecchi Drive
Salt Lake City, UT 84114
Phone: 801-584-8256
Fax: 801-536-0966
http://health.utah.gov/newbornscreening
Pediatric Genetic Counseling
See all Pediatric Genetic Counseling services providers (4) in our database.
Pediatric Metabolic Genetics
See all Pediatric Metabolic Genetics services providers (2) in our database.
For other services related to this condition, browse our Services categories or search our database.