Project Description:
The Down Syndrome Clinic at the Monroe Carell Jr. Children's Hospital at Vanderbilt provides comprehensive care and professional services to children and adults with Down syndrome. The Clinic staff and team work with families who are referred by their primary care provider. They assist patients in finding therapeutic services and educational/behavioral support. The clinic uses a multidisciplinary approach, bringing together medical providers from different specialties in one place for families in a single visit. Clinic consultations are offered with specialists in genetic medicine, cardiology, physical therapy, nutrition, occupational therapy, speech/ language/ feeding therapy, and audiology. The clinic serves families from TN and other states in the MidSouth.
We have recently been granted access to data from the NICHD-sponsored DS-ConnectTM dataset (Parisi, 2014). This 3,500 person dataset reflects a large-scale, national, and federally-sponsored effort to recruit potential subjects for Down syndrome biomedical and psychological research. Overall, this project features over 3,500 parent-report surveys concerning persons with Down syndrome of all ages, with separate questionnaires focusing on basic demographics (Demographics and Contact Sharing Questionnaire); health, work, and living status during adulthood (Adulthood Questionnaire); health conditions and preventative health practices (Initial Health Questionnaire); and the age, causes, and circumstances of death (Deceased Questionnaire). Although emphasizing health-medical information and populated primarily with participants who are children (i.e., below 20 years of age), the DS-ConnectTM dataset also includes questions on the residential and work status of 500 adults with Down syndrome, aged 20 through 59. We hope to examine residential, work, and health status of adults who are in their 20s, 30s, 40s, and 50s, with particular attention to the changes in residential and/or work status, and health or other correlates of such aging-related changes.
