OSCR: Increasing the pace of data sharing

Over the past several years, AGRE has been reaching out to our families to let them know about the Online System for Clinical Research (OSCR). The information provided by families via OSCR is an important resource for autism researchers. Completed forms become available to researchers almost immediately and capture information that is typically not available, thus broadening the scope of autism research.

The environmental surveys on OSCR are an excellent example of forms that are helping researchers tremendously. Studying environmental factors has become a hot topic in the autism community and is of great interest to researchers. The collection of environmental data is of growing importance as more researchers begin to study how genes and environment interact in the development of Autism Spectrum Disorders. Since AGRE first released them, nearly 1,200 environmental surveys have been collected, covering topics such as products used in the household, lifestyle-related exposures, mother’s diet, parents’ occupational and residential histories, and chemical sensitivities.

As the amount of data in OSCR grows, so does its significance to researchers. For analytical purposes, increasing the number of surveys collected helps provide more reliable answers to the questions being asked. AGRE is committed to assessing the needs of the research community and releasing forms on OSCR that can provide important clues to researchers using our database.

In its role as a Data Coordinating Center, AGRE will continue to use OSCR to collect vital information to provide to researchers. OSCR makes it possible to gather substantial amounts of information from various families across the nation and deliver it to researchers with a single click. Of course, none of this can be achieved without dedicated families taking the time to go online and fill out these questionnaires. AGRE and its researchers are deeply grateful for the efforts of all our families.