Kramer, Jessica Marvelle PHD

The lack of patient reported outcome measures (PROMs) appropriate for youth with DD poses a significant problem; research indicates proxy respondents do not identify the same needs as youth, and patient advocates and funders are increasingly calling for services considerate of patient-reported outcomes. Technology is now available that can scaffold the cognitive processes needed to self-report, yet many currently available PROMs use outdated paper and pencil forms that are not designed to meet the unique needs of youth with DD. This Phase II STTR will leverage our team’s Phase I research and build a clinically robust PEDI-PRO Assessment Software to address the market gap in PROMs for youth with DD.