What We Need You to Do
Start by filling out our short online survey to provide input on your experience with FA and your ideas regarding what key issues about FA remain poorly understood and should be the focus of our research challenges.
April 2012 to June 30, 2012: Over 150 members of the FA community filled out a survey that gathered their ideas on the key FA questions that need solving. As the survey proceeded, results were posted on BRIDGE so that all could see what relevant themes were “bubbling” up.
July 2012-August 2012: FA researchers will use the survey data to identify the solvable challenges from those suggested and then define the resources and tools needed for each potential effort. The top research ideas will be posted on BRIDGE so that all can review the proposed projects and use the FA Community Forum to provide feedback.
September 2012-November 2012: Once the top FA Challenge projects are identified, a call to action will go out on BRIDGE and throughout the FA Community for citizens, researchers and funders to step up with the data and funding needed to launch one or more of the FA community's top Challenge proposals.
End-2012: After the first FA Challenge project launches, you will be able to track its progress here on BRIDGE. The project will leverage technologies that make it easy for citizen/FA patient data to be contributed to the research and for a bidirectional conversation between researchers and citizen-patients about the data to ensue. This first FA Challenge project will not only move researchers toward a better understanding of Fanconi Anemia: it will be one of the first examples of an open biomedical research project, with citizen-patients actively involved at all stages of the effort and with researchers incentivized to share data in real time.
