During this fiscal year this descriptive, cross-sectional study was approved by the NCI IRB. The goal of this protocol is to increase the understanding of the psychological and social needs of adult individuals affected with Marfan syndrome. This genetic condition follows a dominant pattern of inheritance and is characterized by skeletal, ocular, and cardiac complications. The objectives of the study are as follows: a) describe psychological aspects of Marfan syndrome, b) correlate adjustment and health behaviors to individual personality traits in affected individuals, c) correlate adjustment and health behaviors to family history of Marfan syndrome. The study instrument is comprised of 10 validated psychometric tools and demographic questions. The greater portion of this year has been spent on finalizing of the study questionnaire. This study was implemented through the NIH Genetics Clinic at the Warren Grant Magnuson Clinical Center and the Medical Genetics Clinic at Johns Hopkins Hospital. Nine subjects were enrolled and completed the questionnaire. Other sites throughout the United States are currently seeking IRB approval for the study. It is expected that at least 350 affected individuals will be enrolled in three years of the study's duration.
