- The National Center on Birth Defects and Developmental Disabilities (NCBDDD) is established.
- Dr. Jose Cordero is named director of NCBDDD.
- CDC organizes the Autism and Developmental Disabilities Monitoring (ADDM) Network, a surveillance program to collect data for determining prevalence of autism spectrum disorders and other developmental disabilities at multiple sites across the U.S.
- CDC establishes the Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Network.
- NCBDDD publishes the first evaluation showing that folic acid fortification has reduced the prevalence of neural tube defects in the U.S.
- Congress authorizes NCBDDD to develop public health programs related to muscular dystrophy under the Muscular Dystrophy Community Assistance, Research and Education Amendments of 2001 (also known as the MD-CARE Act).
- Congress mandates that issues related to children’s neurobehavioral disorders, including ADHD, be included as part of NCBDDD’s research agenda. Tourette syndrome is added to this group of disorders in 2004.
- NCBDDD releases its first multi-state, population-based report on the prevalence estimate of fetal alcohol syndrome.
- NCBDDD and the FDA carry out two investigations to learn more about a possible association between cochlear implants and bacterial meningitis among children with cochlear implants. The study finds that children with an implant are 30 times more likely to get a type of bacterial meningitis than are children of the same age among the general population. The studies also find that children with an implant with a positioner (used with some implant models) are more likely to get meningitis than children who have an implant without the positioner. The implant model with a positioner voluntarily is removed from the market by the manufacturer in July 2002. Vaccination recommendations are changed to include cochlear implant recipients in the high-risk group for bacterial meningitis.
- The Division of Blood Disorders joins NCBDDD.
- NCBDDD issues the AUTISM A.L.A.R.M. with the American Academy of Pediatrics, summarizing the recent prevalence studies done that confirm that more children with autism spectrum disorder are being identified than in the past.
- The “Learn the Signs. Act Early.” campaign is launched to raise awareness of the signs of autism and other developmental disabilities.
- Congress directs NCBDDD to initiate a Diamond Blackfan anemia program.
- NCBDDD and its partners release a set of 10 recommendations for preconception health and convene the first national preconception conference.
- Dr. Edwin Trevathan is named director of NCBDDD.
- The Autism and Developmental Disabilities Monitoring Network issues its first reports, indicating an average of 1 in 150 children are affected by autism spectrum disorder.
- The Study to Explore Early Development (SEED) is implemented, one of the largest studies of its kind in the U.S. to help identify factors that might put children at risk for autism spectrum disorder and other developmental disabilities.
- Based on the results of an NCBDDD-sponsored clinical trial, prophylactic (preventative) treatment becomes the standard of care in the U.S. for people with hemophilia.
- NCBDDD establishes the Thrombosis and Hemostasis Centers Research and Prevention Network to provide an opportunity for broad, population-based research on deep vein thrombosis and pulmonary embolism.
Page last reviewed: October 10, 2019