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In 1999, a small group of parents affected by unexplained toddler death attended a presentation at the SIDS Alliance national convention in Atlanta, GA. The presentation by Dr Henry Krous was entitled "Post-Infancy SIDS- Is it on the rise?" Following the presentation, Dr Krous agreed to review the childrens' records of those families present to learn more about them. Over the following two years, more families who had experienced an unexplained childhood death were discovered and the beginning of the San Diego SUDC Research Project began
Laura Crandall, a Neurological Physical Therapist by training, and Chelsea Hilbert, an ER Social Worker by training brainstormed together to create the mission of The Sudden Unexplained Death In Childhood Program. A proposal was submitted to the CJ Foundation for SIDS to support this new program and it was granted. The CJ Foundation for SIDS is a U.S. national non-profit 501c-3 health organization meeting the needs of the SIDS community though funding SIDS research, support services and awareness programs.
In the fall of 2001, as part of the CJ Foundation, The SUDC program was created to be a centralized resource for Sudden Unexplained Death In Childhood providing information, support, advocacy and research. Each year, the SUDC Program provides more support services to more and more families. The program is entirely run by private donations to the CJ Foundation that are designated to SUDC.
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Historical Milestones In the United States
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 From mid-1800’s |
Findings regarding sudden unexpected infant death are published in medical journals. |
 1959 and 1963 |
Long QT Syndrome described as syndrome (Drs. Romano, Ward, Jervell, and Lange-Nielsen) |
 1960’s |
The Guild for Infant Survival and the National SIDS Foundation, voluntary parent support organizations, are founded. |
 1969 |
At the Second International Conference on Causes of Sudden Death in Infants (Seattle, WA) the term “SIDS” is coined and defined as “the sudden death of any infant or young child which is unexpected by history, and in which a thorough postmortem examination fails to demonstrate an adequate cause of death.” |
 Prior to 1974 |
The Federal Government’s role in SIDS was to develop prevention strategies and fund research to determine the cause(s). |
 1972 |
First Fatty Acid Oxidation (FAO) disorder discovered. It was named CPT-2 |
 1974 |
The SIDS Act was passed (Public Law 93-270). It broadened the federal commitment to SIDS by designating the National Institute of Child Health and Human Development (NICHD) as the primary federal agency for conducting SIDS research and authorized the Department of Health and Human Services (DHHS) to award grants for projects to provide information and counseling to families affected by a death due to SIDS and collect, analyze, develop and disseminate information relating to SIDS to health and human service professionals, public safety officials and the general public. |
 1975 |
The National Center for Health Statistics introduces the code for SIDS into the Eighth Revision of the International Classification of Diseases, Adapted for use in the United States. (Currently, in 2006, there does not exist an ICD code for SUDC) |
 1979 |
SIDS information and counseling programs are carried out through the SIDS Program Office within the Office of Maternal and Child Health. The World Health Organization recognizes SIDS as an official cause of death.CDC Wonder Database: 5279 documented cases of SIDS in the U.S. this year (crude death rate 151.1 per 100,000 live births). SUDC type deaths occurred to 224 children between the ages of 1-4 yrs (crude death rate 1.8). Among 5-9 year olds, this occurred to 38 children (crude death rate 0.2). And among children 10-14 years of age, this occurred to 55 children (crude death rate 0.3). |
 1981 |
Congress passed the Maternal and Child Health Services Block Grant Act which established a federal-state partnership for services at the State and local level. It’s goals were to improve the health of all Mothers and children.
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 1982 |
First report of MCAD deficiency |
 1984 |
First FOD diagnosis acquired after death. |
 1989 |
A Five-year SIDS research Plan was requested by the U.S. Senate from the NICHD’s Center for Research of Mothers and Children.NICHD meeting of Physicians and Scientists to revise the SIDS definition and to re-establish the Federal interagency Panel on SIDS to facilitate information sharing regarding Federal SIDS activites. The NICHD adopted a new definition of SIDS to be “the sudden death of an infant under 1 year of age which remains unexplained after a thorough case investigation, including performance of a complete autopsy, examination of the death scene, and review of the clinical history.” |
 Early 1990s |
First genetic cause for LQTS established (Mark Keating and colleagues) |
 1990 |
CDC Wonder Database: 5417 documented cases of SIDS in the U.S. this year (crude death rate 130.3). SUDC type deaths occurred to 218 children between the ages of 1-4 yrs (crude death rate 1.5). Among 5-9 year olds, this occurred to 34 children (crude death rate 0.2). And among children 10-14 years of age, this occurred to 61 children (crude death rate 0.4) |
 1991 |
NICHD initiated multicenter study: Collaborative Home Infant Monitoring Evaluation (CHIME) |
 1994 |
Back to Sleep Campaign begins Krous HF. The international standardized autopsy protocol for sudden infant death. In: TO Rognum, ed. Sudden Infant Death Syndrome. New Trends in the Nineties. Oslo: Scandinavian University Press, 1995:81-95). Case eligibility- All infants two years of age or younger who die suddenly and unexpectedly and in whom the causes of death are not obvious.1998: First epidemiologic association of QT interval and SIDS - (Peter Schwartz and colleagues) |
 1999 |
During the SIDS Alliance National Meeting in Atlanta, GA, Dr. Henry Krous presents session titled: “SIDS: Is the Incidence Increasing In Infants Older Than One Year of Age?” Families in attendance requested that Dr Krous review their child’s records.
First molecular autopsy for LQTS -(Ackerman and colleagues)
CDC Wonder Database: 2648 documented cases of SIDS in the U.S. this year (crude death rate 69.3). SUDC type deaths occurred to 192 children between the ages of 1-4 yrs (crude death rate 1.3). Among 5-9 year olds, this occurred to 48 children (crude death rate 0.2). And Among children 10-14 years of age, this occurred to 55 children (crude death rate 0.3).
1999: A “SIDS over One” email group brought (~40) SUDC families together for information and support.
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 2000 |
A New Jersey law is passed that mandates standardized postmortem care of all children who die suddenly and unexpectedly from birth to the age of three years. It provides the right for pediatric pathology consultation, and allows for tissue samples to be taken for research purposes.
2523 documented cases of SIDS in the U.S. this year
Strategic Plan 2000 (The third Five Year SIDS Research Plan) commits to investigating the sudden unexpected deaths of children ages 1-4 years of age.
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 2001 |
The SIDS Alliance Annual Conference offers session by Dr Henry Krous on SUDC
The Northeast Regional Convention on SIDS and Unexpected Death from Birth to Three: Finding our Way Forward (Secaucus, NJ) introduces SUDC as a core element in their program.
First molecular epidemiology study demonstrating small percent (<5%) of SIDS due to a cardiac channel defect - (Ackerman and colleagues).
The SUDC Program was created in September 2001 as part of the CJ Foundation for SIDS. It was developed to provide a centralized resource for information, support and advocacy. It serves families and professionals affected by the tragedy of SUDC, and promotes awareness of SUDC in communities.
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 2002 |
The SUDC Research Project, funded by The CJ Foundation for SIDS and The SIDS Alliance, begins. |
 2005 |
Dr Krous et al publish the first definition of SUDC in: Krous HF, Chadwick AE, Crandall L, Nadeau-Manning. Sudden Unexpected Death In Childhood: A Report of 50 Cases. Pediatric Dev Pathol. 2005;8:307-319 |
 2009 |
Nearly 400 families affected by SUDC are registered with the SUDC program. Over 100 children have been studied by the SUDC Research Project. Several publications from the research project are helping increase awareness for SUDC. Families have joined forces with the SUDC program to raise awareness and funds for support services, awareness and research. Over 1 Million dollars have now been raised through the SUDC and by families to attain the goals of The SUDC program. |
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