The Fibrous Dysplasia/McCune-Albright syndrome (FD/MAS) Patient Registry Working Group will attend a series of meetings held during the week of 12/14. These meetings will educate Working Group members on comparative effectiveness research (CER), and engage the many stakeholders of the Working Group to provide ideas related to the types of CER that would be beneficial for FD/MAS patients.
In this post, you will find a recording of one of the meetings, attended by a Patient-Centered Outcomes Research Institute (PCORI) representative. After you have either attended a meeting, or watched the recording of the meeting, your input is greatly welcome, via the survey below.
Analysis of the responses will be shared in January.
Video recording of PCORI/CER Presentation (19 minutes): https://parkviewresearchcenter.webex.com/parkviewresearchcenter/ldr.php?RCID=187a84903a9ee81caa4534d8b29b1b6c