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. During this fiscal year we began distributing our questionnaires. Questionnaires were distributed to study participants who came to the NIH, Children?s Hospital in Cincinnati, and at the 1998 National Marfan Foundation, Inc. Annual Meeting. Currently, we have about 50 completed questionnaires. A contract company is developing the database to input these data so that we may be analysis shortly. It is expected that about 350 affected individuals will be enrolled in the three years of the study?s duration.
