The proposed cooperative agreement between the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Center for Disease Control and Prevention (CDC) and the Association of University Centers on Disabilities (AUCD) will strengthen the nation's capacity to carry out public health activities in the areas of primary and secondary prevention of birth defects (BD) and developmental disabilities (DD) and health promotion for persons with disabilities, in collaboration with NCBDDD and local and state public health agencies. AUCD will leverage the expertise of its national network of University Centers, their affiliated researchers, and their combined extensive experience and capabilities in conducting research, education and service to achieve the following four major goals: 1. Facilitate surveillance and research of BD and DD; 2. Strengthening expertise in the fields of BD and DD through training of professionals in public health and related fields; 3. Developing educational resources and curricula for health care practitioners, researchers, trainees, individuals with disabilities and family members so that effective heath services and evidence based clinical/environmental interventions for children and adults with disabilities are available; 4. Disseminating materials and information to state public health departments, policy makers, academic institutions and advocates aimed at increasing access to social participation of children and adults with disabilities through education and public policy development. This cooperative agreement will further develop a focused program of activities in support of the initiatives and mandates of the NCBDDD and assist NCBDDD in fulfilling its commitment to achieve the Healthy People 2010 (Chapter 6) 10 core objectives and 3 developmental objectives that target key benchmark areas assessing the health status of persons with disabilities (US Department of Health and Human Services, 2000). AUCD will support and work with its network of University Centers, collaborate with other disability organizations and communicate frequently with CDC officials in carrying out these goals. Furthermore, the activities of the cooperative agreement will be instrumental in bridging the gap in knowledge of BD and DD and other disabilities and removing the barriers for individuals with disabilities to lead healthy and productive lives in their communities.
Sherman, Stephanie L; Kidd, Sharon A; Riley, Catharine et al. (2017) FORWARD: A Registry and Longitudinal Clinical Database to Study Fragile X Syndrome. Pediatrics 139:S183-S193 |
Kaufmann, Walter E; Kidd, Sharon A; Andrews, Howard F et al. (2017) Autism Spectrum Disorder in Fragile X Syndrome: Cooccurring Conditions and Current Treatment. Pediatrics 139:S194-S206 |
McDonald, Katherine E; Stack, Erin (2016) You say you want a revolution: An empirical study of community-based participatory research with people with developmental disabilities. Disabil Health J 9:201-7 |
Raspa, Melissa; Edwards, Anne; Wheeler, Anne C et al. (2016) Family Communication and Cascade Testing for Fragile X Syndrome. J Genet Couns 25:1075-84 |
Kaufmann, Walter E (2016) Neurogenetics in Child Neurology: Redefining a Discipline in the Twenty-first Century. Curr Neurol Neurosci Rep 16:103 |
Wheeler, Anne C; Mussey, Joanna; Villagomez, Adrienne et al. (2015) DSM-5 changes and the prevalence of parent-reported autism spectrum symptoms in Fragile X syndrome. J Autism Dev Disord 45:816-29 |
Hartley, Sigan L; Wheeler, Anne C; Mailick, Marsha R et al. (2015) Autism Symptoms Across Adulthood in Men with Fragile X Syndrome: A Cross-Sectional Analysis. J Autism Dev Disord 45:3668-79 |
Horner-Johnson, Willi; Dobbertin, Konrad; Beilstein-Wedel, Erin (2015) Disparities in dental care associated with disability and race and ethnicity. J Am Dent Assoc 146:366-74 |
Kidd, Sharon A; Lachiewicz, Ave; Barbouth, Deborah et al. (2014) Fragile X syndrome: a review of associated medical problems. Pediatrics 134:995-1005 |
Bailey Jr, Donald B; Raspa, Melissa; Wheeler, Anne et al. (2014) Parent ratings of ability to consent for clinical trials in fragile X syndrome. J Empir Res Hum Res Ethics 9:18-28 |
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