Autism Speaks and Prometheus Research have teamed up to develop a new, more user-friendly assessment portal through which parents can complete surveys for use in autism research. The tool, called the Online Clinical System for Research (OSCR), allows parents to complete forms over the web and makes them accessible to Autism Speaks’ Autism Genetic Resource Exchange (AGRE) scientists, among others. Assessments collected via OSCR provide important clues for autism research, increase the power of statistical analyses, and are easily shared with scientists and clinicians via a secure browser. The next step is to expand OSCR’s impact by making it available to the Autism Speaks Autism Treatment Network.
Prometheus Research, a leading provider of data management services for behavioral and biomedical research, developed the newest version of OSCR. “Our implementation placed a greater emphasis on usability but retained the functionality that researchers and parents value most,” said Prometheus CEO, Dr. Leon Rozenblit . “This was a excellent use case for our new open-source electronic data capture tool, RexAcquire, part of the RexDB platform. RexDB simplifies data collection and, most importantly, automates the integration of survey data with internal study-specific information.” Autism Speaks is now able to view OSCR data alongside information on patient visits, diagnosis, biospecimens, and medications. “Through its support for new study configuration and data re-purposing, the integrated data management platform will enable Autism Speaks to significantly grow their research capabilities,” added Dr. Rozenblit.
Autism Speaks’ VP of Clinical Programs, Dr. Clara Lajonchere , added “The OSCR system provides researchers and clinicians the ability to rapidly collect important clinical information while simultaneously reducing the burden on families by allowing them to participate at their own pace. This web-based patient-facing data collection interface will allow families to work more closely with researchers and healthcare professionals in real time. Questionnaires can be integrated with electronic medical records or made available to clinicians prior to a clinical visit allowing healthcare professionals to better understand patient needs. Families participating in Autism Speaks Autism Treatment Network will see the benefits of OSCR firsthand during their clinical visits and participation in research projects.”
To access OSCR, visit https://oscr.familyagre.org/.