Neurodevelopmental Conditions and Lifespan Health Outcomes
- Examine how the nature of select congenetically-based neurodevelopmental conditions (Down syndrome, Williams syndrome, Prader-Willi syndrome, Fragile X) presents in a manner that produces predictable health-related declines with maturation and aging that is specific to the condition.
- Determine if motor and behaviorally-based neurodevelopmental conditions (autism, cerebral palsy, spina bifida) follow a pattern of decline and secondary impairment related to the presentation of co-incident conditions that are predicable with maturation and aging.
- Investigate pathways between personal behaviors and choices, community living arrangements, and other daily life factors that may increase disease risk and potentially threaten functionality or survival in persons with seven specific neurodevelopmental conditions: autism, cerebral palsy, Prader-Willi syndrome, Down syndrome, Williams syndrome, Fragile X, and spina bifida.
Project StaffMatthew Janicki, PhD
Philip Davidson, PhD
C. Michael Henderson, MD
Laura M. Robinson, MPH
Kelly Hsieh, PhD
Jon Meccarello, PhD
Training ActivitiesHealth Behaviors and Risk Factors
Related Research FindingsLife Course Health Patterns and Health Care Utilization Among Adolescents and Adults with Spina Bifida: Preliminary Findings
*Word Document OR *PDF For further information, please visit the University of Rochester Neurodevelopmental and Behavioral Pediatrics website.
Related Publications and ProductsFor information, please visit the University of Rochester Neurodevelopmental and Behavioral Pediatrics website.
The University of Rochester, with funding from NIDRR provided to the RRTC on Aging and Developmental Disabilities-Lifespan, Health and Function at the University of Illinois at Chicago, is undertaking an extensive project examining disease and health compromising conditions among adults with intellectual and developmental disabilities. One aim of the project is to ascertain the health status of adults who have been diagnosed with either autism spectrum disorders, cerebral palsy, Down syndrome, fragile X syndrome, Prader Willi syndrome or spina bifida. A second aim is to collect data on people with intellectual and developmental disabilities of various etiologies.
The study protocol includes data collection using the Rochester Health Status Survey-IV (RHSS-IV), a 16-page questionnaire composed of four sections: 1) demographics, 2) general physical health, 3) medical conditions including lifetime prevalence, point prevalence (last 24 months), and incidence (last 3 months), and 4) health services utilization and health surveillance. The survey has 58 single or multiple response questions with a yes/no option and space for comments. It is designed to be completed by someone familiar with the subject's health.
The PIs of the project, Drs. Matthew Janicki and Philip Davidson, are seeking collaboration sites where data might be collected and added to the overall data pool. If you or your program/center would be interested in collaborating with this project, by collecting data using the RHSS-IV, even if only a few cases, the PI’s would be interested in hearing from you. If interested, or simply want more information, contact Dr. Janicki at [email protected] or Dr. Davidson at [email protected].
Further information, as well as the RHSS-IV and its user’s manual can be sourced at: www.urmc.rochester.edu/pediatrics/divisions/developmental_disabilities/PADD/research.cfm