To update and bring online the 400 + video projects completed for the Angelman Project (now in DVD format).
To follow up on as many of the original 73 Angelman Project subjects as is possible, in order to document changes over time through the creation of new videos and mini documentaries, using the Angelman Project protocols, and updating these as needed.
To provide access to both the original Angelman Project videos and the follow-up videos, in an online, web based resource.
To develop a prototype of a Quality of Life satisfaction scale for people with AS. (QOL-AS) using methods and measures recommended by the Centers for Disease Control and Prevention (CDC) http://www.cdc.gov/hrqol/methods.htm#4, and an interactive video-enhanced Health Days Measure chart and tool set to assess physical and mental health over time. (Measuring Healthy Days: Population Assessment of Health-Related Quality of Life, CDC, November 2000). Using the findings of our follow up study and drawing on volunteer families (from The Angelman Project follow up and from the RDCRN-AS Natural History Study), we will develop a prototype of our QOL-AS measure, which, integrating the recommendations of the CDC’s measures for Health Related Quality of Life (HRQOL) will establish the standards for choosing informants, and develop measures for differences in disease severity, family status, age and other variables.
To create a data/video gathering platform and analysis application for users to upload video as well as questions – a mechanism for sharing images, videos and data among the RDCRN researchers and families, as well as other stakeholder groups.
AIMS PHASE TWO:
To determine the reliability of this life satisfaction measure through testing on a larger sample of individuals who are part of the RDCRN-AS and the Angelman Project Follow Up.
To make our results available to researchers and families for evaluation by potential users including clinicians and families.
