The specific aims of the Dysmorphology Research Resource are to use the previously established CIFASD physical examination protocol and classification system to perform and/or validate physical examinations of all infants, children and adults who are participants in the CIFASD renewal project, to provide on-going training and re-training of local pediatricians/neonatologists/geneticists who are providing preliminary examinations at some CIFASD sites and to further develop and refine a telemedicine program developed in the last funding period. The overall goals of the Dysmorphology Research Resource is to 1) assure consistency as well as accuracy in recognition of Fetal Alcohol Spectrum Disorders (FASDs) at all CIFASD project sites where new subjects are being recruited 2) provide, through the telemedicine program, an added source of research subjects resulting in a partial solution to the problems created by the lack of adequate numbers of research subjects with a diagnosis of an FASD, 3) train additional physicians and health care providers, particularly those in low income, underserved areas of the United States, in the diagnosis of FASDs, and 4) through the telemedicine program, reach underserved areas that lack physicians with expertise in clinical recognition of FASDs. In that all children will be evaluated using a standard protocol by one of two physicians (KLJ or MDC) with expertise in recognition of features characteristic of prenatal alcohol exposure dramatically increases the integrity of conclusions that can be drawn regarding the overall aims of the CIFASD Consortium. The outcomes of all clinical studies completed through the Consortium will be totally dependent on these evaluations, either face-to-face or through telemedicine, by the Dysmorphology Research Resource.
Fetal Alcohol Spectrum Disorders are one of the most common brain-based disorders occurring with a prevalence of approximately 3% to 4% of the general population. In that all children are evaluated using a standard protocol by one of two physicians in the Dysmorphology Research Resource with expertise in recognition of features characteristic of prenatal alcohol exposure dramatically increases the integrity of conclusions that can be drawn regarding the overall aims of the CIFASD Consortium. By using telemedicine and face-to-face examinations the Dysmorphology Research Resource will identify effected individuals in all consortium sites, including remote, medically underserved areas in Minnesota and New Mexico, which will provide them access to affective intervention programs.
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