During this fiscal year, this descriptive, cross-sectional study was developed and submitted to 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 greater portion of the year has been spent collecting background information on the study population and related populations, as well as identifying, choosing and/or adapting psychological testing instruments and writing the protocol. The study instrument is comprised of 10 validated psychometric tools and demographic questions. Study participants will complete the instrument one-time. This project will be implemented through the NIH Genetics Clinic at the Warren Grant Magnuson Clinical Center. It is planned to include the National Marfan Foundation, Inc. endorsed genetics clinics throughout the United States as additional study sites. We will begin to offer study participation to eligible individuals in Fall, 1996. It is expected that at least 350 affected individuals will be enrolled in three years of the study's duration.
