OneFlorida’s Front Door for Researchers Now Open

The OneFlorida Clinical Research Consortium’s research-facing front door is now officially open. To access it, click here or click on the ‘Front Door’ tab on the OneFlorida website. The OneFlorida Front Door provides helpful guidelines and instructions for accessing and using the consortium’s vast research infrastructure and resources, including the following:

• Request a prep-to-research data query. This free service can be used to help formulate research questions or learn more about the data available in the OneFlorida Data Trust. To use this service, researchers must complete an application, available here. Queries are reviewed bi-weekly by the executive committee.
• Use the OneFlorida research infrastructure. To obtain and use patient-level or practice-based data from the network, PIs must complete an application, which must be approved by the OneFlorida executive committee and the OneFlorida centralized IRB. Use of the research infrastructure also involves service fees, which are posted on the website.
• Schedule a research consultation.
• Learn about other available resources, including data-related support, the OneFlorida centralized IRB, study implementation support and research training.

You’ll also find information on OneFlorida’s service fees, facilities and how to proceed with your study after receiving your notice of award.

OneFlorida Learning Showcase Draws a Crowd at AMIA Annual Symposium

Several representatives from the OneFlorida Clinical Research Consortium attended the American Medical Informatics Association’s (AMIA’s) annual conference Nov. 12-16 in Chicago. The consortium offered a Learning Showcase on the OneFlorida Clinical Data Research Network and had a presence in the exhibition hall as well.

William Hogan, M.D., M.S., a professor in the Department of Health Outcomes & Policy in the College of Medicine at the University of Florida (UF), director of biomedical informatics for the UF Clinical and Translational Science Institute, and director of informatics for the OneFlorida Clinical Research Consortium, presented the learning showcase on the structure of the OneFlorida research network and database. He also discussed research opportunities within the consortium.

Hogan said the OneFlorida Learning Showcase was so popular among conference attendees that many who came to hear the presentation had to stand.

“The number of people who attended this presentation was a reminder of the growing role of biomedical data science and informatics in health care research,” Hogan said.

OneFlorida Steering Committee Member Part of Team that Administered First Commercial Duchenne Muscular Dystrophy Therapy in the U.S.

Read more about this important development in Duchenne muscular dystrophy treatment in this UF Health press release, which features Barry Byrne, M.D., Ph.D., a professor of molecular genetics at the UF College of Medicine and director of the Powell Center for Rare Disease Research and Therapy, who also co-leads the OneFlorida Duchenne Muscular Dystrophy Team.

Citizen Scientist Involved in National PCORnet Data Committee

In September, Citizen Scientist Ravi Bhosale attended the PCORnet Data Committee meeting in Washington, D.C. This meeting offered a chance for the Data Committee workgroups, comprised of Clinical Data Research Network (CDRN) representatives from across the country, to provide updates and discuss upcoming meetings and work teams within the larger Data Committee.

The Data Committee is charged by the PCORnet Council to oversee PCORnet’s data network, which is managed by the PCORnet Coordinating Center. Bhosale is involved in several smaller workgroups, including one focused on developing annual updates of the Common Data Model and creating the processes and governance for the Common Data model. Bhosale is also a member of the Data Security and Privacy workgroup, which promotes practices that aim to protect the security and confidentiality of individual-level clinical data with respect to data acquisition, linkage, storage, analysis, and transmission.

As a result of the discussions during the Data Committee meeting, Bhosale is now identified as a co-author for Strategic Assessment and Planning for the PCORnet Common Data Model, which was reviewed during the meeting and has been submitted as an abstract to AMIA. The AMIA Joint Summits on Translational Science will take place in San Francisco, California in March 2017.